peer review of group presentations

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3 Group Presentation Pitfalls — and How to Avoid Them

• Allison Shapira

Strategies for a polished, unified final product.

Putting together an effective group presentation takes teamwork and coordination so it doesn’t look like a patchwork quilt. And yet, many of us never budget the time to fully prepare. The author outlines some of the common mistakes people make in group presentations and offers best practices to keep you on track. 

Many of us have experienced poor group presentations. If you’re giving one, it’s the last-minute scramble the night before to decide who is presenting which part of the presentation. If you’re observing one, it’s the chaos of hearing multiple people talking over one another or, even worse, simply reading their slides word-for-word and ignoring their audience. 

• Allison Shapira teaches “The Arts of Communication” at the Harvard Kennedy School and is the Founder/CEO of Global Public Speaking, a training firm that helps emerging and established leaders to speak clearly, concisely, and confidently. She is the author of the new book, Speak with Impact: How to Command the Room and Influence Others (HarperCollins Leadership).

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Peer feedback form for group presentations

A sample form for use by students when they are observing other students’ class presentations, focusing on constructive suggestions for improvement.

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How to Give Effective Presentation Feedback

A conversation with sam j. lubner, md, facp.

Giving an effective scientific presentation, like all public speaking, is an acquired skill that takes practice to perfect. When delivered successfully, an oral presentation can be an invaluable opportunity to showcase your latest research results among your colleagues and peers. It can also promote attendee engagement and help audience members retain the information being presented, enhancing the educational benefit of your talk, according to Sam J. ­Lubner, MD, FACP , Associate Professor of Medicine and Program Director, Hematology-Oncology Fellowship, at the University of Wisconsin Carbone Cancer Center, and a member of ASCO’s Education Council.

Sam J. ­Lubner, MD, FACP

In 2019, the Education Council launched a pilot program to provide a group of selected speakers at the ASCO Annual Meeting with feedback on their presentations. Although some of the reviewers, which included members of the Education Council and Education Scholars Program, as well as ASCO’s program directors, conveyed information to the presenters that was goal-referenced, tangible, transparent, actionable, specific, and personalized—the hallmarks of effective feedback—others provided comments that were too vague to improve the speaker’s performance, said Dr. Lubner. For example, they offered comments such as “Great session” or “Your slides were too complicated,” without being specific about what made the session “great” or the slides “too complicated.”

“Giving a presentation at a scientific meeting is different from what we were trained to do. We’re trained to take care of patients, and while we do have some training in presentation, it usually centers around how to deliver clinical information,” said Dr. Lubner. “What we are trying to do with the Education Council’s presentation feedback project is to apply evidence-based methods for giving effective feedback to make presentations at ASCO’s Annual Meeting, international meetings, symposia, and conferences more clinically relevant and educationally beneficial.”

GUEST EDITOR

The ASCO Post talked with Dr. Lubner about how to give effective feedback and how to become a more effective presenter.

Defining Effective Feedback

Feedback is often confused with giving advice, praise, and evaluation, but none of these descriptions are exactly accurate. What constitutes effective feedback?

When I was looking over the literature on feedback to prepare myself on how to give effective feedback to the medical students and residents I oversee, I was amazed to find the information is largely outdated. For example, recommendations in the 1980s and 1990s called for employing the “sandwich” feedback method, which involves saying something positive, then saying what needs to be improved, and then making another positive remark. But that method is time-intensive, and it feels disingenuous to me.

What constitutes helpful feedback to me is information that is goal-referenced, actionable, specific, and has immediate impact. It should be constructive, descriptive, and nonjudgmental. After I give feedback to a student or resident, my next comments often start with a self-reflective question, “How did that go?” and that opens the door to further discussion. The mnemonic I use to provide better feedback and achieve learning goals is SMART: specific, measurable, achievable, realistic, and timely, as described here:

• Specific: Avoid using ambiguous language, for example, “Your presentation was great.” Be specific about what made the presentation “great,” such as, “Starting your presentation off with a provocative question grabbed my attention.”
• Measurable: Suggest quantifiable objectives to meet so there is no uncertainty about what the goals are. For example, “Next time, try a summary slide with one or two take-home points for the audience.”
• Achievable: The goal of the presentation should be attainable. For example, “Trim your slides to no more than six lines per slide and no more than six words per line; otherwise, you are just reading your slides.”
• Realistic: The feedback you give should relate to the goal the presenter is trying to achieve. For example, “Relating the research results back to an initial case presentation will solidify the take-home point that for cancer x, treatment y is the best choice.”
• Timely: Feedback given directly after completion of the presentation is more effective than feedback provided at a later date.

The ultimate goal of effective feedback is to help the presenter become more adept at relaying his or her research in an engaging and concise way, to maintain the audience’s attention and ensure that they retain the information presented.

“Giving a presentation at a scientific meeting is different from what we were trained to do.” — Sam J. Lubner, MD, FACP Tweet this quote

Honing Your Communication Skills

What are some specific tips on how to give effective feedback?

There are five tips that immediately come to mind: (1) focus on description rather than judgment; (2) focus on observation rather than inference; (3) focus on observable behaviors; (4) share both positive and constructive specific points of feedback with the presenter; and (5) focus on the most important points to improve future ­presentations.

Becoming a Proficient Presenter

How can ASCO faculty become more proficient at delivering their research at the Annual Meeting and at ASCO’s thematic meetings?

ASCO has published faculty guidelines and best practices to help speakers immediately involve an audience in their presentation and hold their attention throughout the talk. They include the following recommendations:

• Be engaging. Include content that will grab the audience’s attention early. For example, interesting facts, images, or a short video to hold the audience’s focus.
• Be cohesive and concise. When preparing slides, make sure the presentation has a clear and logical flow to it, from the introduction to its conclusion. Establish key points and clearly define their importance and impact in a concise, digestible manner.
• Include take-home points. Speakers should briefly summarize key findings from their research and ensure that their conclusion is fully supported by the data in their presentation. If possible, they should provide recommendations or actions to help solidify their message. Thinking about and answering this question—if the audience remembers one thing from my presentation, what do I want it to be?—will help speakers focus their presentation.
• When it comes to slide design, remember, less is more. It’s imperative to keep slides simple to make an impact on the audience.

Another method to keep the audience engaged and enhance the educational benefit of the talk is to use the Think-Pair ( ± Share) strategy, by which the speaker asks attendees to think through questions using two to three steps. They include:

• Think independently about the question that has been posed, forming ideas.
• Pair to discuss thoughts, allowing learners to articulate their ideas and to consider those of others.
• Share (as a pair) the ideas with the larger group.

The value of this exercise is that it helps participants retain the information presented, encourages individual participation, and refines ideas and knowledge through collaboration.

RECOMMENDATIONS FOR SLIDE DESIGN

• Have a single point per line.
• Use < 6 words per line.
• Use < 6 lines per slide.
• Use < 30 characters per slide.
• Use simple words.
• When using tables, maintain a maximum of 6 rows and 6 columns.
• Avoid busy graphics or tables. If you find yourself apologizing to the audience because your slide is too busy, it’s a bad slide and should not be included in the presentation.
• Use cues, not full thoughts, to make your point.
• Keep to one slide per minute as a guide to the length of the presentation.
• Include summary/take-home points per concept. We are all physicians who care about our patients and believe in adhering to good science. Highlight the information you want the audience to take away from your presentation and how that information applies to excellent patient care.

Speakers should also avoid using shorthand communication or dehumanizing language when describing research results. For example, do not refer to patients as a disease: “The study included 250 EGFR mutants.” Say instead, “The study included 250 patients with EGFR -mutant tumors.” And do not use language that appears to blame patients when their cancer progresses after treatment, such as, “Six patients failed to respond to [study drug].” Instead say, “Six patients had tumors that did not respond to [study drug].”

We all have respect for our patients, families, and colleagues, but sometimes our language doesn’t reflect that level of respect, and we need to be more careful and precise in the language we use when talking with our patients and our colleagues.

ASCO has developed a document titled “The Language of Respect” to provide guidance on appropriate respectful language to use when talking with patients, family members, or other health-care providers and when giving presentations at the Annual Meeting and other ASCO symposia. Presenters should keep these critical points in mind and put them into practice when delivering research data at these meetings. ■

DISCLOSURE: Dr. Lubner has been employed by Farcast Biosciences and has held a leadership role at Farcast Biosciences.

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30 presentation feedback examples

Jump to section

You're doing great

You should think of improving

Tips to improve

3 things to look for when providing presentation feedback

3 tips for giving effective feedback.

We’re all learning as we go. 

And that’s perfectly OK — that’s part of being human. On my own personal growth journey, I know I need to get better at public speaking and presenting. It’s one of those things that doesn’t necessarily come naturally to me. 

And I know there are plenty of people in my shoes. So when it comes to presenting in the workplace, it can be intimidating. But there’s one thing that can help people continue to get better at presentations: feedback . 

The following examples not only relate to presentations. They can also be helpful for public speaking and captivating your audience. 

You’re doing great 

• You really have the natural ability to hand out presentation material in a very organized way! Good job!
• Your presentations are often compelling and visually stunning. You really know how to effectively captivate the audience. Well done!
• You often allow your colleagues to make presentations on your behalf. This is a great learning opportunity for them and they often thrive at the challenge.
• Keeping presentations focused on key agenda items can be tough, but you’re really good at it. You effectively outline exactly what it is that you will be discussing and you make sure you keep to it. Well done!!
• You created downloadable visual presentations and bound them for the client. Excellent way to portray the company! Well done!
• Your content was relevant and your format was visually appealing and easy to follow and understand. Great job! You’re a real designer at heart!
• You always remain consistent with the way you present and often your presentations have the same style and layout. This is great for continuity. Well done!
• You always remain consistent with every presentation, whether it be one on ones, small group chats, with peers, direct reports, and the company bosses. You have no problem presenting in any one of these situations. Well done!
• You are an effective presenter both to employees and to potential clients. When controversial topics come up, you deal with them in a timely manner and you make sure these topics are fully dealt with before moving on. Well done!
• You effectively command attention and you have no problem managing groups during the presentation.

You should think of improving 

• You’re a great presenter in certain situations, but you struggle to present in others. Try to be more consistent when presenting so that you get one single-minded message across. This will also help you broaden your presentation skills by being able to portray one single idea or message.
• You tend to be a little shy when making presentations. You have the self-confidence in one-on-one conversations , so you definitely have the ability to make compelling presentations. Come on! You can do it!
• During presentations, there seems to be quite a lack of focus . I know it can be difficult to stick to the subject matter, however you need to in order for people to understand what the presentation is about and what is trying to be achieved.
• To engage with your audience and make them attentively listen to what you have to say, you need to be able to use your voice in an effective manner to achieve this. Try to focus on certain words that require extra attention and emphasis these words during your presentation.
• Knowing your audience is critical to the success of any presentation. Learn to pick up on their body language and social cues to gauge your style and tone. Listen to what your audience has to say and adjust your presentation accordingly.

• During presentations, it’s expected that there will be tough questions . Try to prepare at least a couple of days before the time so that you can handle these questions in an effective manner.
• To be an effective presenter you need to be able to adjust to varying audiences and circumstances. Try learning about who will be in the room at the time of the presentation and adjust accordingly.
• Remember not to take debate as a personal attack. You tend to lose your cool a little too often, which hinders the discussion and people feel alienated. You can disagree without conflict .
• The only way you are going to get better at public speaking is by practicing, practicing, practicing. Learn your speech by heart, practice in the mirror, practice in front of the mirror. Eventually, you’ll become a natural and you won't be afraid of public speaking any longer.
• Your presentations are beautiful and I have no doubt you have strong presentation software skills. However, your content tends to be a bit weak and often you lack the substance. Without important content, the presentation is empty.

Tips to improve 

• Remember it’s always good to present about the things you are passionate about . When you speak to people about your passions they can sense it. The same goes for presentations. Identify what it is that excites you and somehow bring it into every presentation. it’ll make it easier to present and your audience will feel the energy you portray.
• Sometimes it can be easier to plan with the end result in mind. Try visualizing what it is you are exactly expecting your audience to come away with and develop your presentation around that.
• Simplicity is a beautiful thing. Try to keep your presentations as simple as possible. Make it visually appealing with the least amount of words possible. Try interactive pictures and videos to fully immerse your audience in the presentation.
• It’s a fine balance between winging the presentation and memorizing the presentation. If you wing it too much it may come across as if you didn't prepare. If you memorize it, the presentation may come off a bit robotic. Try to find the sweet spot, if you can.
• When presenting, try to present in a way that is cause for curiosity . Make people interested in what you have to say to really captivate them. Have a look at some TED talks to get some tips on how you can go about doing this.
• Remember presentations should be about quality, not quantity. Presentations that are text-heavy and go on for longer than they should bore your audience and people are less likely to remember them.
• Try to arrive at every staff meeting on time and always be well prepared. This will ensure that meetings will go smoothly in the future.
• Remember to respect other people's time by always arriving on time or five minutes before the presentation.
• Remember to ask the others in the meeting for their point of view if there are individuals during presentations.
• If you notice presentations are deviating off-topic, try to steer it back to the important topic being discussed.

Presentation feedback can be intimidating. It’s likely the presenter has spent a good deal of time and energy on creating the presentation.

As an audience member, you can hone in on a few aspects of the presentation to help frame your feedback. If it's an oral presentation, you should consider also audience attention and visual aids.

It’s important to keep in mind three key aspects of the presentation when giving feedback. 

Communication

• Were the key messages clear? 
• Was the speaker clear and concise in their language?
• Did the presenter clearly communicate the key objectives? 
• Did the presenter give the audience clear takeaways? 
• How well did the presenter’s voice carry in the presentation space? 

Delivery 

• Was the presentation engaging? 
• How well did the presenter capture their audience? 
• Did the presenter engage employees in fun or innovative ways? 
• How interactive was the presentation? 
• How approachable did the presenter appear? 
• Was the presentation accessible to all? 

Body language and presence 

• How did the presenter carry themselves? 
• Did the presenter make eye contact with the audience? 
• How confident did the presenter appear based on nonverbal communication? 
• Were there any nonverbal distractions to the presentation? (i.e. too many hand gestures, facial expressions, etc.)  

There are plenty of benefits of feedback . But giving effective feedback isn’t an easy task. Here are some tips for giving effective feedback. 

1. Prepare what you’d like to say 

I’m willing to bet we’ve all felt like we’ve put our foot in our mouth at one point or another. Knee-jerk, emotional reactions are rarely helpful. In fact, they can do quite the opposite of help. 

Make sure you prepare thoughtfully. Think through what feedback would be most impactful and helpful for the recipient. How will you word certain phrases? What’s most important to communicate? What feedback isn’t helpful to the recipient? 

You can always do practice runs with your coach. Your coach will serve as a guide and consultant. You can practice how you’ll give feedback and get feedback … on your feedback. Sounds like a big loop, but it can be immensely helpful. 

2. Be direct and clear (but lead with empathy) 

Have you ever received feedback from someone where you’re not quite sure what they’re trying to say? Me, too. 

I’ve been in roundabout conversations where I walk away even more confused than I was before. This is where clear, direct, and concise communication comes into play. 

Be clear and direct in your message. But still, lead with empathy and kindness . Feedback doesn’t need to be harsh or cruel. If it’s coming from a place of care, the recipient should feel that care from you. 

3. Create dialogue (and listen carefully) 

Feedback is never a one-way street. Without the opportunity for dialogue, you’re already shutting down and not listening to the other person. Make sure you’re creating space for dialogue and active listening . Invite questions — or, even better, feedback. You should make the person feel safe, secure, and trusted . You should also make sure the person feels heard and valued. 

Your point of view is just that: it's one perspective. Invite team members to share their perspectives, including positive feedback . 

You might also offer the recipient the opportunity for self-evaluation . By doing a self-evaluation, you can reflect on things like communication skills and confidence. They might come to some of the same important points you did — all on their own.

Now, let’s go practice that feedback 

We're all learners in life.

It's OK to not be perfect . In fact, we shouldn't be. We're perfectly imperfect human beings, constantly learning , evolving, and bettering ourselves. 

The same goes for tough things like presentations. You might be working on perfecting your students' presentation. Or you might want to get better at capturing your audience's attention. No matter what, feedback is critical to that learning journey . 

Even a good presentation has the opportunity for improvement . Don't forget the role a coach can play in your feedback journey.

Your coach will be able to provide a unique point of view to help you better communicate key points. Your coach can also help with things like performance reviews , presentation evaluations, and even how to communicate with others.

Enhance your presentation skills

Unlock new heights in your career with personalized coaching tailored to boost your presentation prowess.

Madeline Miles

Madeline is a writer, communicator, and storyteller who is passionate about using words to help drive positive change. She holds a bachelor's in English Creative Writing and Communication Studies and lives in Denver, Colorado. In her spare time, she's usually somewhere outside (preferably in the mountains) — and enjoys poetry and fiction.

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Center for Teaching Innovation

Resource library, teaching students to evaluate each other, why use peer review.

Peer assessment, or review, can improve overall learning by helping students become better readers, writers, and collaborators. A well-designed peer review program also develops students’ evaluation and assessment skills. The following are a few techniques that instructors have used to implement peer review.

Planning for peer review

• Identify where you can incorporate peer review exercises into your course.
• For peer review on written assignments, design guidelines that specify clearly defined tasks for the reviewer. Consider what feedback students can competently provide.
• Determine whether peer review activities will be conducted as in-class or out-of-class assignments (or as a combination of both).
• Plan for in-class peer reviews to last at least one class session. More time will be needed for longer papers and papers written in foreign languages.
• Model appropriate constructive criticism and descriptive feedback through the comments you provide on papers and in class.
• Explain the reasons for peer review, the benefits it provides, and how it supports course learning outcomes.
• Set clear expectations: determine whether students will receive grades on their contributions to peer review sessions. If grades are given, be clear about what you are assessing, what criteria will be used for grading, and how the peer review score will be incorporated into their overall course grade.

Before the first peer review session

• Give students a sample paper to review and comment on in class using the peer review guidelines. Ask students to share feedback and help them rephrase their comments to make them more specific and constructive, as needed.
• Consider using the sample paper exercise to teach students how to think about, respond to, and use comments by peer reviewers to improve their writing.
• Ask for input from students on the peer review worksheet or co-create a rubric in class.
• Prevent overly harsh peer criticism by instructing students to provide feedback as if they were speaking to the writer or presenter directly.
• Consider how you will assign students to groups. Do you want them to work together for the entire semester, or change for different assignments? Do you want peer reviewers to remain anonymous? How many reviews will each assignment receive?

During and after peer review sessions

• Give clear directions and time limits for in-class peer review sessions and set defined deadlines for out-of-class peer review assignments.
• Listen to group discussions and provide guidance and input when necessary.
• Consider requiring students to write a plan for revision indicating the changes they intend to make on the paper and explaining why they have chosen to acknowledge or disregard specific comments and suggestions. For exams and presentations, have students write about how they would approach the task next time based on the peer comments.
• Ask students to submit the peer feedback they received with their final papers. Make clear whether or not you will be taking this feedback into account when grading the paper, or when assigning a participation grade to the student reviewer.
• Consider having students assess the quality of the feedback they received.
• Discuss the process in class, addressing problems that were encountered and what was learned.

Examples of peer review activities

• After collection, redistribute papers randomly along with a grading rubric. After students have evaluated the papers ask them to exchange with a neighbor, evaluate the new paper, and then compare notes.
• After completing an exam, have students compare and discuss answers with a partner. You may offer them the opportunity to submit a new answer, dividing points between the two.
• In a small class, ask students to bring one copy of their paper with their name on it and one or two copies without a name. Collect the “name” copy and redistribute the others for peer review. Provide feedback on all student papers. Collect the peer reviews and return papers to their authors.
• For group presentations, require the class to evaluate the group’s performance using a predetermined marking scheme.
• When working on group projects, have students evaluate each group member’s contribution to the project on a scale of 1-10. Require students to provide rationale for how and why they awarded points.

Peer review technologies

Best used for providing feedback (formative assessment), PeerMark is a peer review program that encourages students to evaluate each other’s work. Students comment on assigned papers and answer scaled and free-form questions designed by the instructor. PeerMark does not allow you to assign point values or assign and export grades.

Contact the Center for a consultation on using these peer assessment tools.

Cho, K., & MacArthur, C. (2010). Student revision with peer and expert reviewing.  Learning and Instruction , 20 (4), 328-338.

Kollar, I., & Fischer, F. (2010). Peer assessment as collaborative learning: A cognitive perspective.  Learning and Instruction , 20 (4), 344-348.

The Teaching Center. (2009). Planning and guiding in-class peer review.  Washington University in St. Louis.  Retrieved from  http://teachingcenter.wustl.edu/resources/writing-assignments-feedback/planning-and-guiding-in-class-peer-review/ .

Wasson, B., & Vold, V. (2012). Leveraging new media skills in a peer feedback tool.  Internet and Higher Education , 15 (4), 1-10.

Xie, Y., Ke, F., & Sharma, P. (2008). The effect of peer feedback for blogging on college students’ reflective learning processes.  Internet and Higher Education , 11 (1), 18-25.

van Zundert, M., Sluijsmans, D., & van Merriënboer, J. (2010). Effective peer assessment processes: Research findings and future directions.  Learning and Instruction , 20 (4), 270-279.

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Open Access

Ten simple rules for effective presentation slides

* E-mail: [email protected]

Affiliation Biomedical Engineering and the Center for Public Health Genomics, University of Virginia, Charlottesville, Virginia, United States of America

• Kristen M. Naegle

Published: December 2, 2021

• https://doi.org/10.1371/journal.pcbi.1009554
• Reader Comments

Citation: Naegle KM (2021) Ten simple rules for effective presentation slides. PLoS Comput Biol 17(12): e1009554. https://doi.org/10.1371/journal.pcbi.1009554

Copyright: © 2021 Kristen M. Naegle. This is an open access article distributed under the terms of the Creative Commons Attribution License , which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.

Funding: The author received no specific funding for this work.

Competing interests: The author has declared no competing interests exist.

Introduction

The “presentation slide” is the building block of all academic presentations, whether they are journal clubs, thesis committee meetings, short conference talks, or hour-long seminars. A slide is a single page projected on a screen, usually built on the premise of a title, body, and figures or tables and includes both what is shown and what is spoken about that slide. Multiple slides are strung together to tell the larger story of the presentation. While there have been excellent 10 simple rules on giving entire presentations [ 1 , 2 ], there was an absence in the fine details of how to design a slide for optimal effect—such as the design elements that allow slides to convey meaningful information, to keep the audience engaged and informed, and to deliver the information intended and in the time frame allowed. As all research presentations seek to teach, effective slide design borrows from the same principles as effective teaching, including the consideration of cognitive processing your audience is relying on to organize, process, and retain information. This is written for anyone who needs to prepare slides from any length scale and for most purposes of conveying research to broad audiences. The rules are broken into 3 primary areas. Rules 1 to 5 are about optimizing the scope of each slide. Rules 6 to 8 are about principles around designing elements of the slide. Rules 9 to 10 are about preparing for your presentation, with the slides as the central focus of that preparation.

Rule 1: Include only one idea per slide

Each slide should have one central objective to deliver—the main idea or question [ 3 – 5 ]. Often, this means breaking complex ideas down into manageable pieces (see Fig 1 , where “background” information has been split into 2 key concepts). In another example, if you are presenting a complex computational approach in a large flow diagram, introduce it in smaller units, building it up until you finish with the entire diagram. The progressive buildup of complex information means that audiences are prepared to understand the whole picture, once you have dedicated time to each of the parts. You can accomplish the buildup of components in several ways—for example, using presentation software to cover/uncover information. Personally, I choose to create separate slides for each piece of information content I introduce—where the final slide has the entire diagram, and I use cropping or a cover on duplicated slides that come before to hide what I’m not yet ready to include. I use this method in order to ensure that each slide in my deck truly presents one specific idea (the new content) and the amount of the new information on that slide can be described in 1 minute (Rule 2), but it comes with the trade-off—a change to the format of one of the slides in the series often means changes to all slides.

• PPT PowerPoint slide
• PNG larger image
• TIFF original image

Top left: A background slide that describes the background material on a project from my lab. The slide was created using a PowerPoint Design Template, which had to be modified to increase default text sizes for this figure (i.e., the default text sizes are even worse than shown here). Bottom row: The 2 new slides that break up the content into 2 explicit ideas about the background, using a central graphic. In the first slide, the graphic is an explicit example of the SH2 domain of PI3-kinase interacting with a phosphorylation site (Y754) on the PDGFR to describe the important details of what an SH2 domain and phosphotyrosine ligand are and how they interact. I use that same graphic in the second slide to generalize all binding events and include redundant text to drive home the central message (a lot of possible interactions might occur in the human proteome, more than we can currently measure). Top right highlights which rules were used to move from the original slide to the new slide. Specific changes as highlighted by Rule 7 include increasing contrast by changing the background color, increasing font size, changing to sans serif fonts, and removing all capital text and underlining (using bold to draw attention). PDGFR, platelet-derived growth factor receptor.

https://doi.org/10.1371/journal.pcbi.1009554.g001

Rule 2: Spend only 1 minute per slide

When you present your slide in the talk, it should take 1 minute or less to discuss. This rule is really helpful for planning purposes—a 20-minute presentation should have somewhere around 20 slides. Also, frequently giving your audience new information to feast on helps keep them engaged. During practice, if you find yourself spending more than a minute on a slide, there’s too much for that one slide—it’s time to break up the content into multiple slides or even remove information that is not wholly central to the story you are trying to tell. Reduce, reduce, reduce, until you get to a single message, clearly described, which takes less than 1 minute to present.

Rule 3: Make use of your heading

When each slide conveys only one message, use the heading of that slide to write exactly the message you are trying to deliver. Instead of titling the slide “Results,” try “CTNND1 is central to metastasis” or “False-positive rates are highly sample specific.” Use this landmark signpost to ensure that all the content on that slide is related exactly to the heading and only the heading. Think of the slide heading as the introductory or concluding sentence of a paragraph and the slide content the rest of the paragraph that supports the main point of the paragraph. An audience member should be able to follow along with you in the “paragraph” and come to the same conclusion sentence as your header at the end of the slide.

Rule 4: Include only essential points

While you are speaking, audience members’ eyes and minds will be wandering over your slide. If you have a comment, detail, or figure on a slide, have a plan to explicitly identify and talk about it. If you don’t think it’s important enough to spend time on, then don’t have it on your slide. This is especially important when faculty are present. I often tell students that thesis committee members are like cats: If you put a shiny bauble in front of them, they’ll go after it. Be sure to only put the shiny baubles on slides that you want them to focus on. Putting together a thesis meeting for only faculty is really an exercise in herding cats (if you have cats, you know this is no easy feat). Clear and concise slide design will go a long way in helping you corral those easily distracted faculty members.

Rule 5: Give credit, where credit is due

An exception to Rule 4 is to include proper citations or references to work on your slide. When adding citations, names of other researchers, or other types of credit, use a consistent style and method for adding this information to your slides. Your audience will then be able to easily partition this information from the other content. A common mistake people make is to think “I’ll add that reference later,” but I highly recommend you put the proper reference on the slide at the time you make it, before you forget where it came from. Finally, in certain kinds of presentations, credits can make it clear who did the work. For the faculty members heading labs, it is an effective way to connect your audience with the personnel in the lab who did the work, which is a great career booster for that person. For graduate students, it is an effective way to delineate your contribution to the work, especially in meetings where the goal is to establish your credentials for meeting the rigors of a PhD checkpoint.

Rule 6: Use graphics effectively

As a rule, you should almost never have slides that only contain text. Build your slides around good visualizations. It is a visual presentation after all, and as they say, a picture is worth a thousand words. However, on the flip side, don’t muddy the point of the slide by putting too many complex graphics on a single slide. A multipanel figure that you might include in a manuscript should often be broken into 1 panel per slide (see Rule 1 ). One way to ensure that you use the graphics effectively is to make a point to introduce the figure and its elements to the audience verbally, especially for data figures. For example, you might say the following: “This graph here shows the measured false-positive rate for an experiment and each point is a replicate of the experiment, the graph demonstrates …” If you have put too much on one slide to present in 1 minute (see Rule 2 ), then the complexity or number of the visualizations is too much for just one slide.

Rule 7: Design to avoid cognitive overload

The type of slide elements, the number of them, and how you present them all impact the ability for the audience to intake, organize, and remember the content. For example, a frequent mistake in slide design is to include full sentences, but reading and verbal processing use the same cognitive channels—therefore, an audience member can either read the slide, listen to you, or do some part of both (each poorly), as a result of cognitive overload [ 4 ]. The visual channel is separate, allowing images/videos to be processed with auditory information without cognitive overload [ 6 ] (Rule 6). As presentations are an exercise in listening, and not reading, do what you can to optimize the ability of the audience to listen. Use words sparingly as “guide posts” to you and the audience about major points of the slide. In fact, you can add short text fragments, redundant with the verbal component of the presentation, which has been shown to improve retention [ 7 ] (see Fig 1 for an example of redundant text that avoids cognitive overload). Be careful in the selection of a slide template to minimize accidentally adding elements that the audience must process, but are unimportant. David JP Phillips argues (and effectively demonstrates in his TEDx talk [ 5 ]) that the human brain can easily interpret 6 elements and more than that requires a 500% increase in human cognition load—so keep the total number of elements on the slide to 6 or less. Finally, in addition to the use of short text, white space, and the effective use of graphics/images, you can improve ease of cognitive processing further by considering color choices and font type and size. Here are a few suggestions for improving the experience for your audience, highlighting the importance of these elements for some specific groups:

• Use high contrast colors and simple backgrounds with low to no color—for persons with dyslexia or visual impairment.
• Use sans serif fonts and large font sizes (including figure legends), avoid italics, underlining (use bold font instead for emphasis), and all capital letters—for persons with dyslexia or visual impairment [ 8 ].
• Use color combinations and palettes that can be understood by those with different forms of color blindness [ 9 ]. There are excellent tools available to identify colors to use and ways to simulate your presentation or figures as they might be seen by a person with color blindness (easily found by a web search).
• In this increasing world of virtual presentation tools, consider practicing your talk with a closed captioning system capture your words. Use this to identify how to improve your speaking pace, volume, and annunciation to improve understanding by all members of your audience, but especially those with a hearing impairment.

Rule 8: Design the slide so that a distracted person gets the main takeaway

It is very difficult to stay focused on a presentation, especially if it is long or if it is part of a longer series of talks at a conference. Audience members may get distracted by an important email, or they may start dreaming of lunch. So, it’s important to look at your slide and ask “If they heard nothing I said, will they understand the key concept of this slide?” The other rules are set up to help with this, including clarity of the single point of the slide (Rule 1), titling it with a major conclusion (Rule 3), and the use of figures (Rule 6) and short text redundant to your verbal description (Rule 7). However, with each slide, step back and ask whether its main conclusion is conveyed, even if someone didn’t hear your accompanying dialog. Importantly, ask if the information on the slide is at the right level of abstraction. For example, do you have too many details about the experiment, which hides the conclusion of the experiment (i.e., breaking Rule 1)? If you are worried about not having enough details, keep a slide at the end of your slide deck (after your conclusions and acknowledgments) with the more detailed information that you can refer to during a question and answer period.

Rule 9: Iteratively improve slide design through practice

Well-designed slides that follow the first 8 rules are intended to help you deliver the message you intend and in the amount of time you intend to deliver it in. The best way to ensure that you nailed slide design for your presentation is to practice, typically a lot. The most important aspects of practicing a new presentation, with an eye toward slide design, are the following 2 key points: (1) practice to ensure that you hit, each time through, the most important points (for example, the text guide posts you left yourself and the title of the slide); and (2) practice to ensure that as you conclude the end of one slide, it leads directly to the next slide. Slide transitions, what you say as you end one slide and begin the next, are important to keeping the flow of the “story.” Practice is when I discover that the order of my presentation is poor or that I left myself too few guideposts to remember what was coming next. Additionally, during practice, the most frequent things I have to improve relate to Rule 2 (the slide takes too long to present, usually because I broke Rule 1, and I’m delivering too much information for one slide), Rule 4 (I have a nonessential detail on the slide), and Rule 5 (I forgot to give a key reference). The very best type of practice is in front of an audience (for example, your lab or peers), where, with fresh perspectives, they can help you identify places for improving slide content, design, and connections across the entirety of your talk.

Rule 10: Design to mitigate the impact of technical disasters

The real presentation almost never goes as we planned in our heads or during our practice. Maybe the speaker before you went over time and now you need to adjust. Maybe the computer the organizer is having you use won’t show your video. Maybe your internet is poor on the day you are giving a virtual presentation at a conference. Technical problems are routinely part of the practice of sharing your work through presentations. Hence, you can design your slides to limit the impact certain kinds of technical disasters create and also prepare alternate approaches. Here are just a few examples of the preparation you can do that will take you a long way toward avoiding a complete fiasco:

• Save your presentation as a PDF—if the version of Keynote or PowerPoint on a host computer cause issues, you still have a functional copy that has a higher guarantee of compatibility.
• In using videos, create a backup slide with screen shots of key results. For example, if I have a video of cell migration, I’ll be sure to have a copy of the start and end of the video, in case the video doesn’t play. Even if the video worked, you can pause on this backup slide and take the time to highlight the key results in words if someone could not see or understand the video.
• Avoid animations, such as figures or text that flash/fly-in/etc. Surveys suggest that no one likes movement in presentations [ 3 , 4 ]. There is likely a cognitive underpinning to the almost universal distaste of pointless animations that relates to the idea proposed by Kosslyn and colleagues that animations are salient perceptual units that captures direct attention [ 4 ]. Although perceptual salience can be used to draw attention to and improve retention of specific points, if you use this approach for unnecessary/unimportant things (like animation of your bullet point text, fly-ins of figures, etc.), then you will distract your audience from the important content. Finally, animations cause additional processing burdens for people with visual impairments [ 10 ] and create opportunities for technical disasters if the software on the host system is not compatible with your planned animation.

Conclusions

These rules are just a start in creating more engaging presentations that increase audience retention of your material. However, there are wonderful resources on continuing on the journey of becoming an amazing public speaker, which includes understanding the psychology and neuroscience behind human perception and learning. For example, as highlighted in Rule 7, David JP Phillips has a wonderful TEDx talk on the subject [ 5 ], and “PowerPoint presentation flaws and failures: A psychological analysis,” by Kosslyn and colleagues is deeply detailed about a number of aspects of human cognition and presentation style [ 4 ]. There are many books on the topic, including the popular “Presentation Zen” by Garr Reynolds [ 11 ]. Finally, although briefly touched on here, the visualization of data is an entire topic of its own that is worth perfecting for both written and oral presentations of work, with fantastic resources like Edward Tufte’s “The Visual Display of Quantitative Information” [ 12 ] or the article “Visualization of Biomedical Data” by O’Donoghue and colleagues [ 13 ].

Acknowledgments

I would like to thank the countless presenters, colleagues, students, and mentors from which I have learned a great deal from on effective presentations. Also, a thank you to the wonderful resources published by organizations on how to increase inclusivity. A special thanks to Dr. Jason Papin and Dr. Michael Guertin on early feedback of this editorial.

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• 3. Teaching VUC for Making Better PowerPoint Presentations. n.d. Available from: https://cft.vanderbilt.edu/guides-sub-pages/making-better-powerpoint-presentations/#baddeley .
• 8. Creating a dyslexia friendly workplace. Dyslexia friendly style guide. nd. Available from: https://www.bdadyslexia.org.uk/advice/employers/creating-a-dyslexia-friendly-workplace/dyslexia-friendly-style-guide .
• 9. Cravit R. How to Use Color Blind Friendly Palettes to Make Your Charts Accessible. 2019. Available from: https://venngage.com/blog/color-blind-friendly-palette/ .
• 10. Making your conference presentation more accessible to blind and partially sighted people. n.d. Available from: https://vocaleyes.co.uk/services/resources/guidelines-for-making-your-conference-presentation-more-accessible-to-blind-and-partially-sighted-people/ .
• 11. Reynolds G. Presentation Zen: Simple Ideas on Presentation Design and Delivery. 2nd ed. New Riders Pub; 2011.
• 12. Tufte ER. The Visual Display of Quantitative Information. 2nd ed. Graphics Press; 2001.

• November 2, 2023

Mastering Group Presentations: A Comprehensive Guide

• Public Speaking

I n certain academic and business situations, delivering a group presentation can be more valuable than a solo one. Not only does it help alleviate the pressure on individuals, but it also promotes collaboration and the production of cohesive work. However, preparing for a group presentation requires careful organization and understanding of the audience . In this comprehensive guide, we will explore the key steps to master group presentations, from preparation to delivery, and provide practical tips for success.

Preparing for the Group Presentation

Like any presentation, a group presentation requires significant preparation. The key to success lies in organizing the group effectively, considering multiple personalities and ensuring a cohesive final product.

Choosing a Presentation Moderator

To facilitate organization, the group should appoint a presentation moderator, essentially the “leader” of the group. The presentation moderator has the final say in decision-making and can allocate speakers for specific questions during the Q&A session.

Understanding the Audience

To make a presentation engaging, it is crucial to consider the audience and tailor the content to their needs. Assessing the audience’s prior knowledge and expectations of the topic helps determine the appropriate level of technicality and detail. For example, presenting the topic of bridge building to civil engineers allows for the use of technical language, while presenting to secondary school students requires simpler explanations.

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Defining the Presentation’s Purpose

Before diving into the content, the group must agree on the purpose of the presentation. Defining a clear message ensures that all subtopics contribute to the overall aim. For example, if the presentation aims to explore the effectiveness of different treatments for social anxiety, the group can build key points around this central theme.

Dividing the Presentation

A well-structured presentation should have a clear beginning, middle, and end. Divide the content into main sections, carefully considering the order of subtopics. The typical presentation structure includes:

• Introduction: The first minute of the presentation should capture the audience’s interest and provide an overview of the presentation’s structure. Clearly state the aims and objectives, such as exploring the effectiveness of different treatments for social anxiety.
• Middle Sections: These sections address the main points of the presentation, providing information that supports the overall aim. Depending on the topic, there can be one or more middle sections.
• Conclusion : Summarize the key points and present a clear conclusion that ties everything together. Assign this section to the best speaker who can effectively synthesize the information presented.

Establishing a time sequence and setting deadlines for each task within the presentation ensures smooth progress and timely completion.

Sharing Responsibility

Unequal participation within a group can lead to disharmony and reduced cohesion in the presentation. Avoid this by assigning each speaker a specific section to work on based on their interests and expertise. Clear expectations and time management guidelines should be communicated to all group members.

Building the Presentation Together

To ensure a cohesive and seamless presentation, it is crucial to build it together as a group. This collaborative approach offers several benefits:

Avoiding Duplication of Content

By working together, the group can avoid duplicating content and ensure that each speaker’s section seamlessly connects with the others. This prevents confusion and maintains a coherent flow throughout the presentation.

Creating Consistency in Slides

While each speaker can work on their own slides, one individual should be responsible for merging them to ensure consistency in design and formatting. Collaboration enables feedback and edits to be made collectively, resulting in a polished final product.

Receiving Feedback

Meeting up to build the presentation allows for valuable feedback on speeches before presenting to an audience. The group can collectively review and refine each speaker’s content, ensuring clarity and relevance.

Establishing a Unified Conclusion

Building the presentation together enables the group to agree on the concluding section. This ensures that all key points are summarized effectively and the presentation concludes with a strong and cohesive ending.

Maintaining Balanced Speaking Time

By working together, the group can ensure that each speaker talks for a similar amount of time and covers a similar amount of information. This balance enhances the overall flow of the presentation and keeps the audience engaged .

Crafting a Compelling Opening

To captivate the audience from the start, consider opening the presentation with a relevant and engaging story. For example, when discussing the benefits of pets on physical and psychological health, share a story or study about someone whose quality of life significantly improved after getting a pet. Incorporating stories into presentations helps make them more memorable and relatable.

Knowing Each Speaker’s Content

To avoid repetition and promote seamless transitions, each speaker should be aware of what the other group members will say. This knowledge allows for cross-referencing between sections, enhancing the coherence and flow of the presentation. Additionally, if a team member is unable to attend, it becomes easier to find a replacement within the group.

Writing and Practicing Transitions

Smooth transitions between speakers contribute to a well-structured and engaging presentation. When transitioning, briefly recap the previous section, introduce the next speaker and their topic, and gesture towards them to signal the handover. Practice these transitions to ensure a seamless flow and keep the audience engaged throughout the presentation.

Rehearsing the Presentation

Rehearsing the presentation multiple times as a group is essential for success. This practice allows the group to evaluate the structure, timing, and content of the presentation. It also increases familiarity with the material, boosting confidence and improving responses to questions. Regular rehearsal sessions help the group identify any necessary edits and ensure a polished delivery.

Handling Nerves Before the Presentation

Nervousness before a presentation is natural, regardless of the audience size. Here are some tips to manage pre-presentation nerves:

Remind Yourself of the Audience’s Expectations

Remember that the audience is there to listen and wants you to succeed. They are likely to empathize with your nerves, as they may also have their own presentations to deliver. Recognizing this shared experience can help alleviate anxiety.

Practice and Familiarize Yourself with the Material

Practicing with your group and rehearsing your section at home builds familiarity and confidence. It allows you to become comfortable with the content and delivery, reducing anxiety.

Focus on Controlled Breathing

Nervousness can lead to rapid breathing, increasing anxiety levels. Practicing controlled breathing techniques can help regulate your breathing and reduce anxiety. Before the presentation, sit upright and take deep breaths in through your nose, filling your abdomen. Hold the breath for a few seconds, then exhale through your nose for a longer duration. Repeat this cycle to calm your nerves .

Avoid Filler Words

When nervous, people tend to use filler words like “um” and “uh” to fill gaps in their speech. Practice pausing instead of using filler words. Embrace the silence and speak deliberately, allowing your words to convey your message effectively.

During the Group Presentation

Once the presentation begins, there are several key considerations to ensure a confident and engaging delivery.

Introduce the Team

The presentation should start with the presentation moderator introducing the team, rather than each individual introducing themselves. This approach creates a smoother transition into the content and enhances the overall cohesion of the presentation.

Pay Attention to the Presentation

While waiting for your turn to speak, actively listen to your colleagues’ presentations. Display interest and engagement in their content, even if you have heard it before. This non-verbal support contributes to a positive group dynamic and keeps the audience engaged.

Utilize Body Language and Eye Contact

Body language is a powerful tool for engaging the audience. When it’s your turn to speak, stand slightly in the foreground of the group, smile at the audience, and make eye contact. Keep your arms uncrossed and avoid looking down at your notes or slides. Instead, face the audience and maintain eye contact as you speak.

Vocal Variety

How you deliver your speech is just as important as the content itself. Adapt your voice to emphasize important points, raise or lower your voice for intensity, and avoid speaking in a monotone manner. Sound enthusiastic and confident, as your tone can significantly impact audience engagement. Speak loudly and clearly, ensuring that everyone can hear you. If you notice yourself speaking too quickly, pause and slow down to maintain clarity.

Warm Up Your Voice

Before starting the presentation, warm up your voice by taking short pauses and breathing deeply. This exercise helps you achieve vocal variety and ensures that your voice remains clear and strong throughout the presentation.

Managing Nervous Behaviors

It’s natural to feel nervous during a presentation, but it’s important to manage nervous behaviors. Avoid shifting your weight or fidgeting, as these actions can distract the audience. Remember that the audience is unlikely to perceive your anxiety as strongly as you feel it.

Delivering a Strong Conclusion

The conclusion is a critical part of the presentation, as it is the last section the audience will remember. Summarize the key points and lead into a clear concluding statement that reinforces the main message. For example, when discussing the impact of social media on self-esteem, list the main points covered and conclude with a definitive statement based on the evidence presented.

Handling Questions and Answer Sessions

The Q&A session after the main presentation can be challenging, as the questions asked may be unpredictable. However, working as a group allows for a distributed knowledge base and ensures that each question is addressed by the most knowledgeable speaker. When answering questions:

• Pause before responding to gather your thoughts.
• Focus on directly answering the question without providing unnecessary information.
• If you don’t understand a question, ask for clarification to avoid providing irrelevant answers.
• It’s okay not to have all the answers. If you’re unsure, acknowledge it and offer to follow up with additional research.

Ending the Presentation

A strong ending is crucial to leave a lasting impression. The presentation moderator should thank the audience and, if applicable, smoothly transition to the next group or topic. This final gesture provides closure and ensures a professional conclusion to the presentation.

Mastering group presentations requires effective organization, collaboration, and preparation. By following the steps outlined in this comprehensive guide, you can confidently navigate the process from start to finish. Remember to choose a presentation moderator, understand your audience , divide the presentation into sections, share responsibilities, build the presentation together, utilize stories to engage the audience , practice transitions, manage nerves, and deliver a strong conclusion. With practice and a collaborative mindset, you can excel in group presentations and effectively communicate your message to diverse audiences . So, embrace the opportunity to work as a team, learn from one another, and grow your public speaking skills through group presentations .

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Key Takeaways

I. Introduction A. Importance of group presentations in academic and business contexts B. Benefits of group presentations, including pressure alleviation, collaboration, and cohesive work C. Overview of the comprehensive guide

II. Preparing for the Group Presentation A. Choosing a Presentation Moderator B. Understanding the Audience C. Defining the Presentation’s Purpose D. Dividing the Presentation E. Sharing Responsibility F. Building the Presentation Together G. Crafting a Compelling Opening H. Knowing Each Speaker’s Content I. Writing and Practicing Transitions J. Rehearsing the Presentation K. Handling Nerves Before the Presentation

III. During the Group Presentation A. Introduce the Team B. Pay Attention to the Presentation C. Utilize Body Language and Eye Contact D. Vocal Variety and Warm-Up Exercises E. Managing Nervous Behaviors F. Delivering a Strong Conclusion G. Handling Questions and Answer Sessions H. Ending the Presentation

IV. Conclusion A. Recap of key points in mastering group presentations B. Encouragement to embrace teamwork and collaborative learning C. Call to action: Build career skills online with public speaking classes and executive coaching

V. Call to Action A. Invitation to start a free trial for online public speaking classes and courses B. Information on how to access executive coaching and business coaching services

This comprehensive guide provides a step-by-step approach to mastering group presentations, emphasizing the importance of organization, collaboration, and preparation. By following the outlined strategies, individuals can confidently deliver engaging and impactful presentations, enhancing their public speaking skills and professional development.

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• v.2(6); 2022 Nov

Effective Peer Review: Who, Where, or What?

Peer review is widely viewed as one of the most critical elements in assuring the integrity of scientific literature ( Baldwin, 2018 ; Smith, 2006 ). Despite the widespread acceptance and utilization of peer review, many difficulties with the process have been identified ( Hames, 2014 ; Horrobin, 2001 ; Smith, 2006 ). One of the primary goals of the peer review process is to identify flaws in the work and, by so doing, help editors choose which manuscripts to publish. It is surprising that one of the persistent problems in peer review is assessing the quality of the reviews. Both authors and journal editors expect peer review to detect errors in experimental design and methodology and to ensure that the interpretation of the findings is presented in an objective and thoughtful manner. In traditional peer review, two or more reviewers are asked to evaluate a manuscript on the basis of the expectation that if the two reviewers agree on the quality of the submission, the likelihood of a high-quality review is increased. Unfortunately, studies have not consistently confirmed a high degree of agreement among reviewers. Rothwell and Martynn (2000) evaluated the reproducibility of peer review in neuroscience journals and meeting abstracts and found that agreement was approximately what would be expected by chance. Similarly, Scharschmidt et al. (1994) found similar results in the evaluation of 1,000 manuscripts submitted to the Journal of Clinical Investigation, where clustering of grades in the middle resulted in an agreement being “…only marginally…” better than chance. These observations suggest that we cannot rely on the agreement of reviewers to be an indication of the quality of the reviews. Another potential way to evaluate the quality of reviews would be to assess the ability of reviewers to detect errors in submissions. It is generally accepted that detection of intentional fraud is beyond the scope of typical peer review, but we do expect reviewers to detect major and minor errors as a primary function of the traditional peer review system ( Hwang, 2006 ; Weissman, 2006 ). Schroter et al. (2008) evaluated the ability of reviewers to detect major and minor errors by introducing errors into three previously published papers describing randomized controlled clinical trials. Reviewers detected approximately three of the nine errors introduced in each manuscript. Unfortunately, reviewers who had undergone training in how to conduct a high-quality peer review were not significantly better than untrained reviewers. Similar results have been reported by Godlee et al. (1998) and Baxt et al. (1998) . Baxt et al. (1998) did report that reviewers who rejected or suggested revision of a manuscript identified more errors than those who accepted the manuscript (decision: 17.3% of major errors detected [accept], 29.6% of major errors detected [revise], and 39.1% of major errors detected [reject]). It is almost certainly true that the extent of the failure to recognize errors in submitted manuscripts may differ among scientific disciplines and journals. It also however seems likely that these observations do have some applicability to journals such as JID Innovations . It is critical that both authors and editors are cognizant of these limitations of peer review in their assessment of reviews. These findings compel journals to continue to work to develop new strategies to train and evaluate reviewers. The findings also suggest that factors beyond the failure to detect objective mistakes in a manuscript may be playing a role in the discrepancy in reviewers’ evaluations. One area of ongoing concern in the peer review process is the role of reviewer bias in assessing the scientific work of colleagues ( Kuehn, 2017 ; Lee et al, 2013 ; Tvina et al, 2019 ).

Bias in the peer review process can take many forms, including collaborator/competitor bias, affiliation bias based on an investigator’s institution or department, geographical bias based on the region or country of origin, racial bias, and gender or sex bias ( Kuehn, 2017 ; Lee et al, 2013 ; Tvina et al, 2019 ). All of these forms of bias present the risk that a decision of the reviewer will not be based solely on the quality or merit of the work but rather be influenced by a bias of the reviewer. We and other journals routinely seek to avoid selecting individuals to review work from their own institutions and ask all reviewers to declare any potential personal conflicts of interest. All these methods require either the editor or the reviewer to identify a bias and fail to address the issue of implicit or unconscious reviewer bias. The dominant method currently utilized for peer review is the so-called single-blind review, in which the identity and affiliations of the authors are known to the reviewers, whereas the identity of reviewers remains unknown to the authors. This has led to concern that knowledge of the identity of the authors and their institutions may be the source of significant reviewer bias, especially implicit bias, in the evaluation of manuscripts. Double anonymized peer review (DAPR), also known as double-blind peer review, has been suggested as a way to address this issue ( Bazi, 2020 ; Lee et al, 2013 ). Studies have compared single-blind with double-blind reviewing and reported that there is no significant difference in the quality of the reviews ( Alam et al, 2011 ; Godlee et al, 1998 ; Justice et al, 1998 ; van Rooyen et al, 1998 ). Although these studies looked at measures such as the number of errors detected, acceptance rate, and distribution of initial reviewer scores, they were not designed to address specific sources of bias such as authors’ gender, institution, or geographic location. Other studies have been undertaken to directly address the issue of bias in the peer review process. Ross et al (2006) compared the acceptance of abstracts submitted to the American Heart Association’s annual scientific meeting during a period when the reviewers knew the identity and origin of the authors (i.e., single-blind review) with when this information was not known by the reviewers (i.e., double-anonymized peer review). They found a significant increase in acceptance of non‒United States abstracts and abstracts from non-English speaking countries when the reviewers were unaware of the country of origin of the abstracts ( Ross et al, 2006 ). They also found a significant decrease in the acceptance of abstracts from prestigious institutions when the reviewers were unaware of the institutions where the work was done. In a similar study, Tomkins et al. (2017) found that papers submitted to a prestigious computer science meeting were more likely to be accepted if they were from famous authors, top universities, and top companies. Okike et al. (2016) documented similar results for manuscripts submitted to the orthopedic literature. They submitted a fabricated manuscript that was presented as being written by two prominent orthopedic surgeons (past Presidents of the American Academy of Orthopedic Surgeons) from prestigious institutions. When reviewed in the traditional single-blind fashion, which included the identity of the authors, the manuscript was accepted by 87% of the reviewers. By contrast, when the identity of the authors was unknown, the manuscript was accepted by 68% of the reviewers ( P  = 0.02) ( Blank, 1991 ). A study conducted at The American Economic Review found that authors at near-top-ranked universities experienced lower acceptance rates when authorship was anonymized ( Blank, 1991 ). Of interest, they also found that for women, there was no difference in the acceptance rate between the double-anonymized and single-blinded reviews; however, for men, the acceptance rate was lower with double-anonymized reviews.

These studies provide strong evidence that knowledge of who and where the study was performed can impact the acceptance of abstracts and manuscripts. This conflicts with the goal of the review process to base our judgments on the quality of what the results demonstrate. It is difficult to estimate how much this may affect the fate of a manuscript at JID Innovations . We do not have evidence that our review process has been impacted by bias as is reported in the studies discussed. However, neither can we state with certainty that such bias is not a factor in the reviews we receive. One of the goals of JID Innovations is to be a truly open-access journal available to all investigators in skin science from around the world. We have sought to be an outlet for studies that challenge existing paradigms or that may report negative results. We want to be seen as providing fair and objective reviews for all authors, regardless of where they work or who they are. If we are to achieve this goal, it is imperative that the who and where of a specific manuscript do not negatively impact the evaluation of the what. We want young investigators, investigators at less prestigious institutions or from less well-known laboratories, and investigators from any country around the world to be confident that their work will be judged by what they report and not by the who and the where.

To be true to this mission, JID Innovations will be initiating DAPR starting in October 2022. This is not being done because we are aware of any issues of bias with our current process of peer review but because we realize that the absence of proof is not proof of absence. As a part of this process, authors will be asked to remove identifying material from manuscripts at the time of submission in preparation for the review process ( https://www.jidinnovations.org/content/authorinfo ). As a result, primary reviewers will see only the what of the manuscript. We realize that this process involves extra work for both the authors and our staff, but we feel the benefits will outweigh this small cost. Indeed, in other journals that have taken this step, surveys have shown that both authors and reviewers ultimately prefer double-anonymized reviews ( Bennett et al, 2018 ; Moylan et al, 2014 ). We realize that achieving 100% anonymization of a manuscript is nearly impossible. Studies have shown that the rate of successful anonymizing, where the reviewers cannot discern the authorship of a manuscript, ranged from 47 to 73%. It is however interesting that even with this rate of success in the anonymizing process, a meta-analysis of trials of double- versus that of single-blind peer review has suggested an impact, with lower acceptance rates with double-anonymized peer review ( Ucci et al, 2022 ). More work clearly needs to be done to assess the value of the DAPR process, and we will be monitoring our results carefully.

The institution of DAPR in JID Innovations will assure our authors that the what of their manuscript is our focus. It does not matter who you are or where you are from. It will also emphasize to our reviewers that our focus is on the what. We will be carefully monitoring the results of this new policy and plan to report back on our experience. We also welcome your feedback on your experience as a reviewer and author for JID Innovations ; send your comments to us at [email protected] .

Finally, this decision should be seen not as the end of our efforts to improve the peer review process but merely as a first step. We will continue to work to improve all aspects of the peer review process for JID Innovations . We firmly believe that the use of double-blind -anonymized peer review will bring us closer to ensuring to our authors and readers that the work that is published by JID Innovations has been selected on the basis of what the paper reports and not on who performed the studies or where they were located.

Conflict of Interest

The author states no conflicts of interest.

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• Open access
• Published: 09 May 2024

A systematic review of telemedicine for neuromuscular diseases: components and determinants of practice

• Deniz Senyel 1 , 2 ,
• Katja Senn 1 ,
• James Boyd 2 &
• Klaus Nagels 1  

BMC Digital Health volume  2 , Article number:  17 ( 2024 ) Cite this article

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Metrics details

Introduction

Neuromuscular diseases (NMDs) entail a group of mostly inherited genetic disorders with heterogeneous phenotypes impacting muscles, the central or peripheral nervous system. They can lead to severe disabilities and shortened lifespans. Despite their severity, NMDs often lack in public awareness and appropriate medical and social support. Telemedicine can improve patients’ and caregivers’ lives by enhancing continuity of and access to care. The first aim of this systematic review was to summarise the status quo of telemedicine services for patients with NMDs. Secondly, barriers and facilitators of the respective implementation processes should be analysed.

The databases PubMed, Web of Science and CENTRAL by Cochrane were searched in May 2022. To be truly explorative, any original evidence from any setting was included. Two independent researchers completed the screening process. Data was extracted and analysed using the taxonomy of Bashshur et al. (2011) and the Consolidated Framework for Implementation Research (CFIR).

Fifty-seven original papers were included in the systematic review. The results showed a high representation of teleconsultations and remote monitoring studies. Teleconsultations replaced in person appointments and telemonitoring mostly focused on ventilation. Physical therapy, pulmonology, neurology, and psychology were the most represented medical specialties. We found barriers and facilitators relating to implementation mainly referred to the intervention and the individuals involved. Technical errors and inaccessibility due to a lack of technical devices or the patient’s disability were stated as hindrances. A positive mindset of users as well as patient empowerment were necessary for the adoption of new technology. Technophobia or uncertainty around technology negatively impacted the implementation process.

This systematic review provides an overview of the current use of telemedicine in patients with NMDs. The distribution of telemedicine interventions between the defined domains was very heterogenous. Previous research has neglected to fully describe the implementation process of telemedicine for NMDs.

The evidence shows that telemedicine can benefit patients with NMDs in a multitude of ways. Therefore, health policies should endorse and incentivise the uptake of telemedicine by institutions and health care workers. Further research needs to be conducted to confirm the current evidence and close existing research gaps.

Peer Review reports

Neuromuscular diseases (NMDs) are a heterogeneous group of disorders, that affect the nerves controlling muscles, leading to muscle weakness, wasting, and other related symptoms [ 1 ]. NMDs are often hereditary and have been linked to 500 different affected genes [ 2 , 3 ]. Most NMDs are classified as rare diseases. The prevalence of NMDs can vary widely and, even for common diagnostic groups, the prevalence ranges between 0.1 to 60 per 100,000 [ 4 ]. The onset, cause, and course of the disease vary widely between disorders [ 5 ]. While each individual's experience is unique, there are common disability-related challenges faced by patients with NMDs. Acknowledging these commonalities and addressing the unique needs of each person are essential for providing comprehensive care and support to individuals and their families living with NMDs. NMDs are highly complex diseases defined by a degenerative course and progressive muscle weakness as the main symptom. Their impact extends beyond the musculoskeletal system, affecting various organs and systems throughout the body, such as eyes, lungs or the brain [ 1 , 2 ]. As a result, patients suffer from a reduced quality of life and a significant disease burden [ 2 , 6 ]. Multidisciplinary care is often considered the optimal approach for providing holistic treatment and symptomatic management for individuals with NMDs [ 7 , 8 , 9 , 10 , 11 ]. The needs of patients during disease progression are ever changing based on disease stage, symptom burden, and personal priorities. General practitioners, specialists, and allied health professionals each bring unique expertise to the care team, allowing for comprehensive, patient-centred care that adapts to changing needs and priorities throughout the course of the disease and ensures continuity and quality of care [ 1 , 12 , 13 ]. Recognising and supporting caregivers is crucial in the care of NMD patients. Most NMD patients receive informal care, often provided by their partner or family members. The caregiver burden increases with the progression of the patient’s disease. In severe cases, it can lead to psychological distress and burnout, a state of physical and emotional exhaustion [ 14 , 15 , 16 , 17 ].

Mobile health apps, teleconsultation and telemonitoring have been proven to be useful tools in the management and treatment of chronic diseases such as diabetes, heart failure, asthma, chronic obstructive pulmonary disease, and cancer. They have the potential to increase treatment adherence, support self-management, and promote continuity of care [ 18 , 19 , 20 ]. They have the potential to reduce hospital admissions, decrease mortality rates, and lessen health services usage [ 21 , 22 , 23 , 24 ]. The research focus in telemedicine for NMDs varies between disorders. A recent systematic review by Helleman et al. showed telemedicine for ALS patients to be a useful option for remote monitoring, consultations, and follow-ups [ 25 ]. From a patient’s perspective it can be time- and cost-saving while reducing stress and fatigue. While telemedicine has demonstrated its value in certain NMDs like ALS, its usage in the care of other NMDs have not been as extensively studied or described.

This systematic review aims to identify telemedicine interventions for patients with NMDs and analyse the barriers and facilitators of the implementation process associated with telemedicine for NMD patients. The taxonomy by Bashshur et al. will be used to standardise terminology and make it easier to categorise and study the various telehealth interventions and services [ 26 ]. The term “Telemedicine” will be used as an umbrella term to encompass a broad range of remote healthcare services and technologies. This is done to avoid the potential ambiguities and unclarities that can arise from newer terms like "e-health" or "telehealth". This review will provide an overview of the status quo and will offer recommendations for future innovations.

This systematic review followed the PRISMA [ 27 ] checklist. The study protocol was registered on PROSPERO (ID: CRD42022325481).

Databases and search strategy

For the literature search PubMed, Web of Science, and the Cochrane database CENTRAL were used as sources. If full text could not be found, the authors were contacted. The final search was conducted in May of 2022.

The search strategy consisted of two major themes: Firstly, synonyms for NMDs and secondly, synonyms and subcategories for telemedicine. The full search strings can be found in the supplementary file 1 .

Study selection

The study selection was conducted by two reviewers KS and DS. The following inclusion criteria were applied: Studies from any country with any healthcare and insurance system were eligible to maximise the diversity and inclusivity of the evidence base. No restrictions regarding cultural or socio-economic context were made to be truly explorative. Articles were eligible for inclusion if their study population consisted of patients with one or more types of NMDs. Since a single comprehensive list of all NMDs could not be found, the list of NMDs by the Muscular Dystrophy Association (MDA) was used as a reference [ 28 ]. If a disease could not be found under the listed disorders, the International Classification of Diseases (ICD) was consulted [ 29 ]. No limitations regarding sex, age, race, or nationality were made. All types of telemedicine were eligible for inclusion. The taxonomy by Bashshur et al. was used as a guiding definition [ 26 ]. Bashshur uses telemedicine in his paper as the original term for ICT in healthcare. The domains include the following components:

Telehealth : Health behavior & education; Health & disease epidemiology; Environmental/Industrial health; Health management & policy.

E-health : Electronic health record; Health information; Clinical decision support system; Physician order entry.

M-health : Clinical support; Health worker support; Remote data collection; Helplines.

Interventions could be implemented on a national, communal, or institutional level. The users could include patients, caregivers, and healthcare workers. Only primary research was included. Due to the explorative nature of the systematic review, no major restrictions regarding study types were made. Only articles written in English or German were included. Due to the rapid pace of technological progress, only studies from the last ten years were considered. This ensured that the telemedicine interventions were not out-of-date or obsolete.

Studies were excluded if no specific diagnostic group was mentioned. Further reviews, study protocols and commentaries were excluded.

Data extraction and analysis

The data extraction and analysis were done by DS. From the included studies the following data points were extracted: authors, year of publication, country, included NMDs, intervention type and analysed outcomes. Additionally, barriers and facilitators of the implementation process were collected. The Consolidated Framework for Implementation Research (CFIR) was used to guide the extraction process [ 30 ]. The CFIR is an established framework for the analysis of implementation processes. Based on this structure, a detailed coding manual with operationalised definitions for each construct was created. This manual served as a reference guide to ensure that the extraction and coding process was systematic and reproducible.

The data synthesis was done narratively. Since no effect measures were used, a quantitative analysis was not applicable. Firstly, the types of telemedicine interventions were clustered according to the domains described by Bashshur et al., to gain a comprehensive understanding of the current landscape of telemedicine applications [ 26 ]. Secondly, the CFIR was used to label quotes on implementation barriers and facilitators [ 30 ].

No meta-analysis was conducted as there are no quantitative outcomes to analyse. Further, the heterogeneity of the studies was not assessed. Due to the broad inclusion criteria, a high heterogeneity could be expected. Since the focus of this systematic review lies on the intervention types, rather than on their effectiveness, subgroup analyses were not performed. Equally no sensitivity analyses were conducted. The focus of the systematic review was not to summarise evidence regarding a specific intervention, it was an exploration of the current telemedicine options for patients with NMDs.

Risk of bias

The study protocol stated a risk of bias assessment using the RoB 2 and ROBINS-I tools [ 31 , 32 ]. This was later changed to the JBI’s critical appraisal tools as they offered a wider selection of checklists [ 33 ]. No meta-bias was analyzed since the outcomes of the studies were not a point of interest.

Included studies

Figure  1 depicts the study selection process for the systematic review, including a total of 57 reports. These included four report pairs with interlinked content. Ando et al. published two papers on the Intervention Careportal in 2019 and 2021 [ 34 , 35 ]. Hobson et al. conducted one study with results disseminated across two publications [ 36 , 37 ]. Martinet et al. conducted two studies utilising the same intervention but with distinct comparison groups and study populations [ 38 , 39 ]. Lastly, Sobierajska-Rek et al. and Wasilewska et al. published two articles addressing different subsections of one main study [ 40 , 41 ]. Studies excluded during the full text screening process can be found in supplementary file 2 .

Flow diagram of the identified studies (Source: own depiction)

Study characteristics

Table 1 presents an overview of the study characteristics. A total of 25 studies were carried out using a cross-sectional design [ 34 , 35 , 40 , 42 , 43 , 44 , 45 , 46 , 47 , 48 , 49 , 50 , 51 , 52 , 53 , 54 , 55 , 56 , 57 , 58 , 59 , 60 , 61 , 62 , 63 ]. Additionally, the review included two case series [ 64 , 65 ] and one case–control study [ 66 ]. Among the studies, 16 adopted a cohort study design [ 41 , 67 , 68 , 69 , 70 , 71 , 72 , 73 , 74 , 75 , 76 , 77 , 78 , 79 , 80 , 81 ], while ten employed an experimental design [ 36 , 37 , 38 , 39 , 82 , 83 , 84 , 85 , 86 , 87 ]. The remaining three reports were method papers [ 88 , 89 , 90 ]. Geographically, the majority of the studies took place in Europe [ 34 , 35 , 36 , 37 , 38 , 39 , 40 , 41 , 42 , 43 , 47 , 48 , 49 , 53 , 58 , 59 , 60 , 62 , 65 , 66 , 68 , 69 , 72 , 73 , 74 , 76 , 80 , 81 , 82 , 84 , 87 , 88 , 89 , 90 ] and the USA [ 44 , 45 , 46 , 51 , 52 , 54 , 56 , 57 , 63 , 67 , 71 , 77 , 78 , 79 , 85 , 86 ]. Two studies were conducted in Canada [ 50 , 64 ] and one in each of the following countries: Japan [ 70 ], India [ 75 ], Brazil [ 83 ], and Australia [ 55 ]. One study included participants from around the globe [ 61 ].

A total of twenty-nine studies exclusively focussed on ALS patients [ 34 , 35 , 36 , 37 , 42 , 46 , 48 , 51 , 52 , 55 , 56 , 57 , 62 , 69 , 70 , 71 , 72 , 73 , 76 , 77 , 78 , 79 , 80 , 81 , 85 , 86 , 87 , 88 , 89 , 90 ], while another four studies included ALS patients alongside other NMD diagnostic groups [ 53 , 54 , 58 , 60 ]. The study outcomes assessed in these studies varied widely. Clinical outcomes, such as physical and cognitive function, as well as mental health, were often used. Further, user satisfaction and utilisation measurements were applied to evaluate interventions. For patient registry studies, epidemiological statistics, including prevalence, were commonly employed as outcome measures.

While the primary focus has been on exploring the availability of telemedicine interventions for patients with NMDS, it is crucial not to overlook the evaluation of individual study quality and the potential impact of bias. In summary, most studies demonstrated a low risk of bias and employed sound methods and procedures. However, certain limitations, such as the lack of comparison groups, insufficient follow up time, and some inadequate reporting, should be noted. Visual depictions and the complete analysis can be found in supplementary material 3 . Three reports were not assessed as they only presented a method paper without empirical results [ 88 , 89 , 90 ].

Telemedicine domains of included interventions

In the following sections the telemedicine interventions included in the analysis will be examined, guided by the taxonomy by Bashshur et al [ 26 ]. According to their definition, telemedicine comprises of three major domains: telehealth, e-health, and m-health . Eight studies were categorised under the telehealth domain, encompassing all traditional public health areas. E-health, mainly describing the online storage of information and supporting tools for physicians, was represented by ten studies. The majority of studies fell within the m-health domain, a rapidly growing field that leverages mobile devices like smartphones and tablets to deliver healthcare services, monitor patients remotely, and support self-management. Given that interventions could encompass elements from different domains, multiple mentions or references to different domains is possible. As stated, there were instances where multiple reports featured identical telemedicine interventions [ 34 , 35 , 36 , 37 , 38 , 39 ]. In order not to bias the results, identical interventions were counted as one during the analysis of the telemedicine domains and components. The distribution of telemedicine domains is illustrated in Fig.  2 a.

Distribution of the telemedicine ( a ) and telehealth domains ( b ) (Source: own depiction)

The studies within the telehealth domain were mostly epidemiological studies. Six studies described online patient registries for one or more NMDs [ 43 , 44 , 47 , 56 , 58 , 72 ]. The remaining two studies were categorised under health education. One study introduced a blended curriculum focusing on physical examinations for patients with NMDs [ 45 ] while another detailed a virtual neuromuscular ultrasound course [ 61 ]. The distribution of the telehealth domain can be seen in Fig.  2 b.

The second smallest domain was e-health (Fig.  3 ). Within this domain, three studies incorporated electronic health records [ 69 , 89 , 90 ]. Health information was the subject of five studies, with two of these not providing an intervention but instead investigating patients’ computer use and information seeking behaviour [ 42 , 50 ]. Only two interventions described clinical decision support systems, one supporting physicians during the diagnostic phase [ 53 ] and another supporting patients with advanced care planning [ 71 ]. A singular app used a function for physician order entries, specifically for nutrition plan entries [ 86 ].

Distribution of the e-Health ( a ) and m-health domains ( b ) (Source: own depiction)

Most included studies contained m-health components (Fig.  3 ). Among the various m-health interventions analysed, helplines represented the smallest category. Specifically, four interventions provided emergency telephone support, and one included useful helpline numbers in their app [ 35 , 60 , 81 , 89 , 90 ].

The predominant categories within the m-health domain were clinical support and remote data collection. Nine studies reported interventions with synchronous consultations and data collection [ 40 , 51 , 57 , 62 , 65 , 73 , 75 , 81 , 85 ]. To illustrate, Christodoulou et al. conducted telephone-based cognitive-behavioural screening in ALS patients [ 85 ], demonstrating how telemedicine can seamlessly combine remote data collection processes with distance consultations. Another example was the remote application of the ALS Functioning Rating Scale during teleconsultations [ 62 ]. An alternative approach identified involving clinical support and remote data collection occurring asynchronously, utilising specially designed devices or mobile applications for data collection [ 35 , 66 , 68 , 69 , 70 , 88 , 90 ]. In this approach, clinical consultation was offered either on demand or automatically triggered based on the collected data.

Fourteen studies used clinical support without remote data collection, including home exercise programs [ 40 , 82 , 83 , 84 ], psychological interventions [ 39 , 87 ] and pure teleconsultation [ 52 , 54 , 55 , 60 , 77 , 78 , 79 ]. In contrast, 12 studies focussed on pure remote data collection without clinical support. This included, accelerometers [ 74 , 80 ], physical assessments [ 63 , 64 , 67 , 76 ] or the assessment of the patient’s nutritional status [ 86 ] or disease-related health [ 37 , 46 , 89 ]. Additionally, Cesareo et al. as well as Wasilewska et al. examined remote pulmonary monitoring devices [ 41 , 49 ].

Barriers and facilitators for the implementation of telemedicine

CFIR was used to assess factors that may facilitate or hinder the implementation of telemedicine. This framework consists of five domains: the inner setting, the outer setting, the implementation process, the intervention characteristics, and the characteristics of the individuals. Relevant information was found in 22 studies, with a predominant focus on patient and carer perspectives [ 34 , 36 , 37 , 41 , 42 , 48 , 49 , 50 , 51 , 52 , 55 , 62 , 63 , 66 , 69 , 73 , 74 , 75 , 76 , 77 , 78 , 83 ]. As a result, no information regarding the inner/outer setting or the implementation process was gathered. All statements focused on the intervention characteristics or the characteristics of the individuals. Thus, the following section is structured according to the two domains and their constructs.

Intervention characteristics

A summary of mentioned barriers and facilitators can be seen in Table  2 .

General characteristics

This category summarises all barriers and facilitators directly linked to the intervention that could not be categorised elsewhere. The most common barrier encountered during the implementation of telemedicine interventions were malfunctions related to internet connectivity or end devices. Examples included software errors [ 51 ], faulty data transmission [ 34 ] or a poor internet connection [ 83 ]. Additionally, it was reported, that the internet and necessary end devices, such as smartphones, tablets, or computers, were often not available [ 48 , 50 , 63 ].

Relative advantage

A major factor for patients was the reduced time and travel burden [ 34 , 51 , 52 , 62 , 76 , 78 ]. In more advanced stages of the diseases travelling with medical equipment became almost impossible, making telemedicine vital for house-bound patients [ 78 ].

Telemonitoring and the remote data collection provided multiple advantages, with patients and caregivers highlighting the timeliness of actions in case of alerts [ 34 , 73 ]. Continuous monitoring also proved beneficial for in-person visits, as medical staff stated that appointments could be used more efficiently with data being analysed beforehand [ 69 ]. Some disadvantages regarding telemedicine were acknowledged. Caregivers and physicians noted the lack of physical evaluation as problematic [ 51 , 52 ]. Additionally, an emotional distance and a lack of informal encounters between patients and healthcare workers was reported [ 52 , 55 ].

Adaptability

Patients appreciated the flexibility of online exercise programs, which were easier to integrate into their daily routines [ 83 ]. It was seen as important to be able to choose the main form of communication [ 55 , 62 ]. For example, patients with speech difficulties communicating via E-Mail was preferred.

Interventions were easier implemented if participants were thoroughly informed about the telemedicine service and if a computer-literate person was on-site [ 78 ]. The duration and frequency of sessions was another major point. Overall, more frequent, and shorter sessions were perceived as less fatiguing [ 78 ].

Design and quality

Critical considerations included the presentation, design, and quality of telemedicine products, emphasizing features like accessible closing mechanisms for wearable devices and age-appropriate designs [ 49 , 74 ].

From a patient’s perspective telemedicine was cost-saving due to reduced travel [ 34 , 48 ]. Nevertheless, acquisition costs could be a barrier for some. Institutional perspectives indicated potential savings, ranging from 20 to 89%, depending on the approach, making costs a crucial factor [ 50 , 77 ].

Characteristics of individuals

The second domain related to the characteristics of individuals. This includes all stakeholders such as patients, caregivers, and healthcare workers. Table 3 depicts the barriers and facilitators relating to the characteristics of individuals.

Knowledge and Beliefs about the Intervention

The CFIR highlights the importance of an individual’s pre-existing knowledge and beliefs about the intervention [ 30 ]. Trust in the intervention was vital for patients using telemonitoring [ 34 , 36 , 52 , 69 , 78 ]. This includes being confident that the transmitted data was monitored and that providers would act in the case of abnormalities.

Self-efficacy

Easy to use technology was seen as an enabler for telemedicine implementation, as it reassured the user in their abilities. Accordingly, barriers arose if patients could not or did not feel confident in using technological devices [ 50 , 51 , 69 ]. Lack of confidence led patients to use technology on rare occasions and only if deemed necessary [ 36 ].

Other personal attributes

Lastly, this category summarises all personal traits of stakeholders that might impact the implementation of the intervention [ 30 ]. Younger, higher-educated patients embraced technology more readily [ 42 , 75 ]. Another enabler was telemonitoring improving patient empowerment, symptom awareness, and communication [ 34 , 36 , 51 , 69 ]. However, some found constant disease confrontation challenging [ 69 ]. Lastly, a personal connection with medical staff enabled telemedicine use [ 36 ].

This systematic review presents a comprehensive overview of the current status of telemedicine applications for patients with NMDs. The primary objective was to classify the identified interventions according to the dimensions of telemedicine. While some studies within this review explored the epidemiology of NMDs, and two interventions provided education for clinical staff, it's clear that certain aspects of telemedicine in public health remain under-studied.

E-health, encompassing health information, an electronic health record or physician order entries/treatment instructions, was comparatively underutilised, with only a subset of interventions included. Moreover, decision support systems were rarely investigated. The predominant focus of most interventions was on clinical support and remote data collection.

The second phase of the analysis concentrated on the implementation process, with a specific focus on identifying barriers and facilitators associated with both the intervention itself and the individuals involved. In comparison to traditional care, telemedicine often demonstrated a relative advantage. The high motivation demonstrated by NMD patients and their caregivers in integrating telemedicine into their care plan is a testament to the potential of telemedicine as a transformative force in healthcare.

Telemedicine was often perceived as a resource-saving, less fatiguing alternative, particularly offering increased accessibility for homebound patients. The lack of physical touch and reduced personal connections emerged as significant barriers. Additionally, the accessibility of technology played a pivotal role, as inadequate design hindered some patients from using telemedicine services. The acceptance and uptake of telemedicine services often depended on the readiness of patients and their caregivers to embrace and adapt to new digital solutions. Recognising the importance of patient empowerment, fostering the development of essential skills and confidence in utilising technology is crucial for enabling patients to actively engage in their healthcare.

Clinical and policy implications

The COVID-19 pandemic created an unprecedented opportunity for the development and implementation of telehealth. Disruptions in healthcare access, caused by social distancing and hygiene guidelines, led healthcare practitioners to expand telemedicine services to ensure the continuity of care [ 91 , 92 ]. This trend extended to the field of neuromuscular disease care as well [ 48 , 62 , 91 , 93 , 94 ]. The American Academy of Neurology's "Telehealth Position Statement" endorsed telemedicine, citing benefits such as improved access, reduced costs, and enhanced comfort, aligning with findings in this review [ 95 ].

Our findings further highlighted important considerations for the successful implementation of telemedicine. Firstly, it is essential to recognise that not all geographic locations are equally suited for telehealth. Remote areas with insufficient internet or cell phone coverage, as well as low-income households with a lack of digital technologies, may encounter difficulties in participating in telemedicine interventions [ 96 ]. Secondly, careful selection of the target population is vital, as the attitude and willingness of users significantly impact technology uptake [ 34 , 36 , 52 , 69 , 78 ]. The acceptance and efficacy of telemedicine interventions are inherently intertwined with diverse cultural attitudes towards healthcare and technology.

Therefore, understanding cultural factors is critical to discern how these variables may influence the successful integration of telehealth programs across diverse patient populations. A systematic analysis of cultural competence would provide valuable insights to refine and customise approaches, meeting the distinctive needs of diverse communities. Such considerations not only enhance the inclusivity of telemedicine but also contribute to its overall effectiveness and acceptance among a broad spectrum of individuals.

As the results have shown, it is vital to adapt telemedicine to the specific and evolving needs of patients with NMDs. These needs not only vary from patient to patient but also change over time as the disease progresses [ 5 ]. Therefore, when designing telemedicine technology for patients with NMDs, emphasis should be placed on adaptability, flexibility and accessibility [ 49 , 55 , 62 , 74 , 83 ].

Designing telemedicine technology that caters for the unique challenges faced by patients with physical disabilities and cognitive impairments is crucial for fostering inclusive healthcare [ 49 , 74 ]. User interfaces need to incorporate accessibility features, such as voice commands, large fonts, and intuitive navigation, to accommodate individuals with motor challenges or cognitive limitations. Additionally, instructions and information must be presented in various accessible formats, accommodating diverse learning needs [ 97 ].

Prioritising plain language and ensuring readability at lower literacy levels is essential. This approach not only makes instructions universally accessible but also empowers all patients to effectively participate in telemedicine interactions. By incorporating these considerations into the design, telemedicine can better serve the needs of patients with NMDs, promoting inclusivity and enhancing the overall effectiveness of healthcare delivery [ 97 ].

Health policies and regulatory frameworks play a significant role in influencing the development and adoption of telehealth practices. A nuanced understanding of these regulations, encompassing aspects such as licensure, reimbursement, and liability, is essential for gaining comprehensive insights into the complex landscape that shapes and governs telemedicine [ 96 ]. The intricate web of reimbursement policies directly influences the economic viability of telemedicine services, impacting both healthcare providers and patients. By navigating and understanding these policy and regulatory intricacies, stakeholders in the telemedicine ecosystem can strategically address and potentially overcome barriers, facilitating a more widespread and effective implementation of telehealth services [ 96 ].

This review reveals that telemedicine interventions for patients with NMDs exist but have yet to realise their full protentional. Firstly, the heavy focus on ALS care should be expanded to encompass all diagnostic groups within the NMD spectrum. Especially the high availability of mHealth applications, which could be seamlessly integrated into care plans. This integration has the potential to enhance continuity of care, simultaneously easing the burden on the healthcare system and reducing appointment frequency for patients [ 69 ].

The incorporation of long-term patient data through remote monitoring holds numerous advantages [ 98 , 99 ]. Continuous data collection could offer enhanced insights into disease progression, thereby improving disease management. Given the degenerative nature of most NMDs, there is a speculation that long-term data could help in detecting early signs of deterioration, facilitating quicker adaption of treatments. Furthermore, detailed information about disease progression could contribute to health prognosis, empowering both patients and healthcare professionals to better plan and coordinate care [ 98 , 99 ]. It is evident that the full benefits of telemonitoring remain undiscovered, making it an important and interesting area for future research. The exploration of these untapped potentials could significantly advance the effectiveness and scope of telemedicine in the context of NMDs.

Research and evaluation opportunities

The current telemedicine landscape yields promising results, particularly in its role in supporting rare disease research through the establishment of disease registries. These registries systematically collect patient data related to disease progression and treatment, forming the foundation for observational studies [ 100 , 101 ]. These studies offer critical insights into the management and progression of rare disease, contributing to evidence-based clinical decisions and facilitating the recruitment of participants for clinical trial.

National and international patient registries are pivotal for studying prevalence and incidence, enhancing our understanding of rare diseases like neuromuscular disorders [ 100 , 101 ]. The establishment of global patient registries becomes especially important for pooling data on rare diseases. International collaborations can help bridge the gap in research for understudied NMDs. By fostering collaboration and sharing data on a global scale, telemedicine-supported registries contribute significantly to advancing our understanding and management of rare diseases.

The results of our systematic review highlight a gap in the research on telemedicine for NMDs. Except for ALS, most NMDs are underrepresented in the current body of literature. Future research should include a more diverse range of diagnostic groups and undertake a comparative analysis of challenges and solutions. This would lead to a higher external validity and faster adaption of telemedicine solutions.

While teleconsultation and remote monitoring for NMDs are well described, other critical domains within telemedicine have received comparatively limited attention. These research gaps should be addressed in the future. Most importantly, implementation science has a critical role in the successful deployment of telemedicine interventions for NMDs. As seen in this systematic review studies, the focus needs to be on patients, caregivers, and health care practitioners, as well as the intervention itself.

It is noteworthy that there is underreporting of crucial aspects, such as the inner and outer settings, as well as the implementation process, in telemedicine interventions for NMDs. Additionally, there is need for research examining the impact of health policies and clinical guidelines on the adoption and implementation of telemedicine. The lack of implementation research has been described in the systematic review by Helleman et al., who analysed telemedicine for ALS patients [ 25 ]. Implementation science is needed to improve the efficiency and uptake of future telemedicine interventions for NMDs [ 102 ].

While our systematic review focused on highlighting the barriers and facilitators of telemedicine, we fully recognise the importance of addressing the validation challenges associated with digital health data. Future research and healthcare policies should emphasise the need for robust validation processes to ensure the reliability and clinical relevance of digital outcomes in telemedicine interventions.

Limitations

Despite an extensive search string, additional search terms might have yielded more results, especially considering synonyms for neuromuscular diseases. A more specific search for individual diagnostic groups would have been more inclusive, but the sheer number of NMDs made this unfeasible.

The literature databases used represent common sources of clinical evidence, but they may not comprehensively cover health policies, management, and health education related to NMDs, which might be found in other types of databases.

The absence of experimental study designs in the individual studies was notable, with most included studies being cross-sectional or observational. However, as this review aims to provide an overview of interventions, this description suffices.

The majority of included studies are from high-income countries, and the extent of telemedicine utilisation in low- and middle-income countries remains unclear. The variation in target population size and time horizon in NMD research reflects the complexity and rarity of these conditions, suggesting a need for longer follow-up times in future studies to better describe long-term outcomes.

This systematic review offers a comprehensive view of the telemedicine landscape in the context of NMDs. While domains like teleconsultation and telemonitoring have received extensive attention and reporting in the literature, other critical domains, such as decision support tools and informational support, are notably lacking in research and documentation. To further understand, develop and implement telemedicine solutions and to close existing gaps in NMD-specific healthcare provision, policies and guidelines are needed. By actively integrating telemedicine into existing healthcare plans and maintaining a commitment to ongoing updates and improvements, healthcare systems can optimise care delivery, enhance patient outcomes, and ensure that individuals with NMDs receive the high-quality care they deserve. In addition, more high-quality studies are needed to close research gaps concerning the implementation process of telemedicine and prove the respective efficiency and effectiveness in the long run.

Availability of data and materials

Due to the nature of the paper, no primary data was generated. All data analysed during this study are included in this published article and its supplementary information files.

Abbreviations

Amyotrophic lateral sclerosis

Anti-synthetase syndrome

Becker muscular dystrophy

Consolidated framework for implementation research

Congenital myopathy

Congenital muscular dystrophy

Charcot-Marie-tooth disease

Dermatomyositis

Duchenne muscular dystrophy

Emery-Dreifuss muscular dystrophy

Facioscapulohumeral muscular dystrophy

Hereditary spastic paraparesis

International classification of diseases

Juvenile dermatomyositis

Lambert-Eaton-myasthenic-syndrome

Limb-Girdle muscular dystrophy

Myotonic dystrophy

Muscular dystrophy

Muscular dystrophy association

Myofibrillar myopathies

Myasthenia gravis

Muscle glycogenosis

Necrotizing myositis

Neuromuscular disease

Overlap myositis

Pompe disease

Polymyositis

Post-Polio syndrome

Randomized controlled trial

Spinal and bulbar muscular atrophy

Spinal muscular atrophy

Transthyretin familial amyloid polyneuropathy

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An evaluation of written materials for supporting hypertensive patient education and counselling when performing a new medicine service in Poland

• Magdalena Jasińska-Stroschein 1 ,
• Justyna Dymek 2 ,
• Mariola Drozd 3 ,
• Olga Sierpniowska 4 ,
• Artur Jędra 5 ,
• Agnieszka Stankiewicz 6 ,
• Paulina Stasiak 1 ,
• Sylwia Cholewa 1 ,
• Magdalena Nowakowska 7 &
• Magdalena Waszyk-Nowaczyk 7  

BMC Medical Education volume  24 , Article number:  521 ( 2024 ) Cite this article

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Background. The New Medicine Service (NMS) was developed in England more than ten years ago, as a three-stage consultation led by community pharmacists to support patients taking new medication for a chronic disease. In Poland, the scheme was officially introduced in January 2023. However, its implementation into common practice has been presented with various obstacles, including the need to develop relationships with general practitioners, resolve the payment structure, and provide training with adequate supporting materials. Hence, written materials have been designed for use as an optional tool for counselling patients receiving an NMS in community pharmacies. Methods. The present study evaluates the ability of these materials to inform patients about the need to adhere to anti-hypertensive medication. A group of 401 randomly-selected adult visitors to pharmacies and/or healthcare centres were surveyed; one third had hypertension in their history. Results. The structure, grammar and readability of the text achieved the required threshold of 40% according to the Plain Language Index. The designed materials effectively informed the patients about anti-hypertensive medication, reflected in an increased score in a knowledge test, and were rated positively regarding information level, comprehensibility and presentation. Conclusion. The proposed material may serve as an additional, “patient-friendly” educational tool for use as part of an NMS.

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The New Medicine Service (NMS) was introduced in England in 2011 by community pharmacists to support patients taking new medication for a chronic disease. Briefly, the NMS consists of a structured and documented one-to-one intervention comprising a set of three consultations, to be completed within the first four weeks of starting a new medication; its aim is to resolve individual patient specific drug problems by providing information, education and advice [ 1 ]. Recent findings indicate that the NMS offers various potential benefits, including supporting better medication adherence for chronically-ill patients, including these starting on cardiovascular medication [ 2 , 3 ]. Its educational function covers the supplementation and reinforcement of information provided by the prescriber, to help patients make informed choices about their care. An NMS was officially introduced in Poland in January 2023 by the present authors, as a three-stage, structured consultation supported by a set of proposed documents (Fig.  1 ) [ 4 , 5 ]. The introduction was made possible by legislation in 2020 obliging pharmacists to provide pharmaceutical care. Pharmacists recently were presented with the opportunity to take a more patient-centred role beyond simply dispensing medicines by performing standardized pharmaceutical consultations (e.g., NMS), medication reviews, prescribing the fully-reimbursed drugs pro auctore and pro familiae , and administering COVID-19 vaccinations; however, the service faces many problems, particularly lack of financing. Nevertheless, cardiovascular disease (CVD) with arterial hypertension (HTN) is currently eligible for pharmaceutical consultation, including NMS.

New medicine service flow chart – Polish adaptation

CVD remains a predominant cause of illness and death globally [ 6 ]. Poor control of HTN has been correlated with a higher risk of cardiac abnormalities including myocardial infarction, stroke, ischemic and brain haemorrhage and peripheral arterial disease [ 7 ]. The prevalence of HTN is believed to be 32.5% among Polish residents between 18 and 80 years of age, and that among 10.8 million Polish patients suffering from HTN, only 2.6 million are receiving successful treatment. Current guidelines indicate one major cause of poor control of BP is non-adherence to treatment [ 8 , 9 ].

A variety of interventions aimed at improving medication adherence in HTN have been assessed to date. These approaches include patient education about medication therapies (e.g., their rationale, proven benefits, indications, contraindications, adverse reactions, dosage regimens), counselling about secondary lifestyle modifications (e.g., blood pressure control, alcohol and smoking cessation, exercise, healthy diet, etc.), as well as monitoring and risk screening [ 10 ]. Other tools could include adherence aids (pillbox which the patient practices filling, personalized illustrated medication schedule), event diaries (e.g., symptom monitoring diary cards) as well as educational booklets and leaflets (written, audiovisual or downloadable formats) [ 11 ]. Some of these tasks might be completed with different types of eHealth tools, including phone calls, blood pressure telemonitoring, emails, websites, smartphone applications and SMS [ 12 ].

The current paper evaluates the ability of a set of written educational materials to inform patients regarding adherence to anti-hypertensive medications. The analysis was performed on material introducing angiotensin converting enzyme inhibitors (ACEI) and thiazide/thiazide-like diuretics, the most popular first-line anti-hypertensive class agents in Poland. The materials, in Polish and English language versions, were designed to be downloaded from the national website for the NMS [ 13 ].

Study design and participants

The study was performed as an observational survey with Polish patients. It received ethical approval from the Bioethics Committee in Poznan (Poland) (KB 108/23). The study sample comprised a randomly-selected group of adults visiting pharmacies or healthcare centres. The inclusion criteria comprised an age of at least 18 years, and the ability to read the presented materials. No history of chronic disease including HTN was necessary. The study was performed over four months from February 1 to May 31, 2023.

The educational materials were created according to the current summaries of product characteristics (SmPCs), guidelines and recommendations [ 7 , 14 , 15 ]. They were then subjected to preliminary review by an interdisciplinary team of physicians and pharmacists, and evaluated with regard to their language content. All materials and their graphic design (Canva Pro) were prepared by the authors of the paper.

The materials consisted of leaflets introducing five classes of first-line hypertensive drugs: thiazide/thiazide-like diuretics, angiotensin converting enzyme, angiotensin II receptor antagonists, calcium channel blockers and beta-blockers. The readability of the language (Polish version) was evaluated according to the Plain Language Index (PLI) available at https://logios.dev/ ; the tool evaluates the text with regard to simple Polish language [ 16 ].

In detail, the PLI index measures ten style features, with 10% points being available for each feature. The material exceeds the PLI threshold of ≥ 40%. However, it is important to note that the algorithm does not verify the substance of the text. The following categories were evaluated by the PLI index: (1) FORMAL (whether the language style is formal and official); (2) TERMS (two-word SPECIALIST EXPRESSIONS: noun + adjective); (3) TOP100 (most frequent words in the text); (4) DWORDS (difficult – rare and long words); (5) PRON (pronouns in the text); (6) N/V (nouns/verb ratio); (7) GRAM (inadequately-used grammatical forms); (8) ASL (sentence length); (9) SENDER (how often the sender reveals their “presence” in the text, by using the words: “me”, “mine”, “our”); (10) RECEIVER (how often the sender addresses the recipient directly, by using the words: “you”, “your”, “take”).

The material, regarding HTN treatment, was then tested in an observational trial. The participants were informed of the nature of the study and that participation was voluntary, confidential and anonymous. All gave their consent to take part. They were asked to read the material, and then complete the test (see below). The participants received an individual five-minute consultation to explain the purpose of the survey and how to complete the documentation. The knowledge test was completed twice, i.e. before being presented with the material (PRE-TEST) and after reading it (POST-TEST). In addition, at the end of the study, the participant completed a questionnaire about their overall rating of the material and various aspects, such as its presentation and readability. Although the participants were not given a time limit to familiarize themselves with the material or to complete the questionnaire, the researcher recorded the time spent reading the leaflet, as well as any comments about the overall comprehensibility of the proposed material. The participants familiarized themselves with the educational material and completed all the questionnaires at the survey location, i.e. community pharmacies or healthcare centres. Only fully-completed questionnaires were included in the analysis.

Instruments

a) The educational material comprised several paragraphs concerning the following topics: the criteria for the diagnosis of HTN, blood pressure monitoring, HTN therapy management. It also focussed on a particular therapeutic agent, its mechanism of action, indications, side effects, special warnings, information for special groups of patients, such as pregnant or nursing mothers, as well as the proper usage of the medication. The material was designed with the possibility of personalization, as it provided a space to complete the patient name, medication brand name and dosage according to general practitioner (GP) recommendations, as well as additional pharmacist information. The final version of the material, including the preliminary language check and comments from the participants, is given in Appendix B (Figures B1 − B5).

b) Specific knowledge test. This quiz included thirteen questions intended to verify that the participants understood the proper use of the hypotensive medications (thiazide/thiazide-like diuretics or angiotensin converting enzyme inhibitor) given in the material. The first six questions (questions 1 to 6) required the participants to indicate one answer out of four. The next two multiple-choice questions required them to choose from eight possible answers, with more than one answer being correct (questions 7 and 8). Finally, the next five questions were true/false statements, with the study participants indicating one of three options: true , false or I do not know (questions 9 to 13) (see Appendix A ).

c) A questionnaire for subjective appraisal of the educational material. The tool contained three sections. The first consisted of five multiple-choice questions about age, gender, place of residence, education and history of chronic disease. The second included eight statements about the attitudes of the respondent toward the proposed educational material, including its readability, sufficiency of provided information, comprehensibility and presentation; the responses were based on a 5-point Likert scale. The respondents were also asked to subjectively rate their knowledge about hypotensive medication before and after reading the leaflet. The possible responses were arranged on a five-point scale ranging from “strongly disagree” (1 point) to “strongly agree” (5 points). The Likert Scale was proposed as it allows respondents to self-report the extent of their agreement or disagreement with a statement; such an approach might reveal subtle differences in subjects’ opinions, instead of a simple “yes” or “no” answer. The last section included two open-ended questions about participant comments concerning the educational material.

The knowledge test and the subjective appraisal of the material did not require information about the health of the respondent (quality of life, chronic disease management or well-being). However, one question enquired into any history of chronic disease, with the aim of differentiating the patients into subgroups for further analysis, i.e. subjects with history of HTN and the remaining ones.

All the materials were provided in Polish and were translated into English. The knowledge test was constructed randomly and subjectively by a seven-member panel comprising interdisciplinary academic experts with relevant expertise and experience within Pharmacy education (panels: pharmacotherapy, pharmaceutical care, drug information and communication), as well as community pharmacists with experience in patient counselling. The panel proposed a list of 25 common questions about the indications, contraindications, side effects, special warnings and proper usage of hypotensive medications; these were prepared according to their prior experience with non-adherent patients who may had misunderstood other informative materials such as patient information leaflets (PILs). Finally, this list was shortened to 13 that were included in the final version of the knowledge test. Any disagreements regarding the selection or interpretation of questions were resolved through verbal discussion until consensus was reached.

To test the questions and reduce the risk of any misunderstanding or misinterpretation, the materials and instruments were pre-tested on a sample of 10 randomly-selected respondents from the target population. Their responses were used for further clarification of the materials before the beginning of the survey and hence were not included in the subsequent analysis.

Data analysis. The results were analysed with STATISTICA 13.1 software (StatSoft Polska Sp. z o.o. 30–110 Kraków, Poland). Selected categorical socio-demographic variables were compared with the chi-square test. To identify participant attitudes toward the material, the non-parametric Kruskal–Wallis one-way analysis of variance was used to compare the mean ranks for quantitative responses (1–5 points), according to a set of covariates (e.g., history of HTN).

For each question in the knowledge test, any change in understanding about anti-hypertensive drugs associated with the learning material was assessed with the Cochrane Q-test. For this purpose, an individual correct response, given by a particular respondent in the PRE- and POST-TEST, was awarded 1 point, and an incorrect answer with 0 points. The total score achieved by a particular respondent, before and after reading the material, was presented as a percentage of possible correct answers, where 100% indicated a flawlessly completed test. The absolute difference between total scores achieved before and after reading the material was calculated, and then analysed using one-way analysis of variance (ANOVA) or Kruskal–Wallis one-way analysis of variance, with post hoc comparisons according to subgroups, e.g. male vs. female. The normality of the distribution of a parameter was checked with the Shapiro-Wilk test, and the homogeneity of variance with the Brown-Forsythe test. Correlation analyses were performed using the non-parametric Spearman’s test. A P -value of less than 0.05 was considered statistically significant.

A total of 401 patients completed the survey, i.e. with a 100% response rate; these were randomly allocated to the thiazide/thiazide-like diuretic (D) and angiotensin converting enzyme inhibitor (A) group. More detailed demographic characteristics of the study participants are presented in Table A1 (Appendix A ). Of the group, 32.8% reported a history of HTN and were reading material about thiazide/thiazide-like diuretics, while 29.0% were reading about angiotensin-converting enzyme ( P  > 0.05, difference between groups). None of the other covariates, including age, gender and education, differentiated the subgroups.

Language readability

After adjustment, the readability, grammar and structure of the proposed educational material were found to be suitable for specialist texts (i.e. ≥40% PLI) (Table A2, Appendix A ).

The knowledge test

The median time for learning the leaflet was six minutes (IQR; 6, 8), the knowledge test was completed within less than 10 min (pre-and post-test), and the approximate time spent on the survey was 20 min. The percentage scores obtained in POST-TEST and PRE-TEST are presented in Table A3 (Appendix A ). A significantly higher percentage of correct answers was found in the POST-TEST than the PRE-TEST ( P  < 0.001) with the exception of Question 6.

The median score achieved before reading the leaflet was 46.8% (IQR; 31.2, 60.0) for thiazide/thiazide-like diuretics, and 43.7% (31.2, 56.2) for angiotensin-converting enzyme inhibitors; this value increased significantly in the POST-TEST to 86.7% (73.3, 93.3, P  < 0.001 – vs. PRE-TEST) and to 75.0% (62.5, 81.2, P  < 0.001 vs. PRE-TEST).

Patients noted a subjective improvement in coping with the hypotensive drug (Fig.  2 ). No significant difference in basic knowledge about hypotensive drugs i.e., the PRE-TEST value, was found between the patients with a history of HTN and those without ( P  > 0.05) (Table A3, Appendix A ). Both hypertensive and normotensive respondents indicated that the educational material improved their knowledge about hypotensive medication (Fig.  3 ). No significant difference in the increase in total test score, and hence understanding, was found between hypertensive and normotensive patients ( P  > 0.05). The final outcome did not appear to be influenced by any other sociodemographic covariates ( P  > 0.05) (Table A4, Appendix A ).

The results of knowledge test before and after learning the materials (median and 25th − 75th quartile)

The knowledge about a drug in the subjective opinion of respondents (median and 25th − 75th quartile) ( a – d )

The patients with a history of HTN required a significantly longer median time to read the leaflet ( P  < 0.05). In both groups, i.e., thiazide/thiazide-like diuretics, and angiotensin converting enzyme inhibitor, participants with only primary or vocational education needed a significantly longer time ( P  < 0.001).

The educational material – appraisal

The participants found the educational material to be clear and well-presented, and provide sufficient information about medications for HTN. The overall rating of the educational material according to a 5-point Likert scale is given in Table A5 (Appendix A ). The final outcome was not differentiated by sociodemographic covariates ( P  > 0.05) (Table A6, Appendix A ). A significant correlation ( P  < 0.01) was found between the total score awarded by a particular respondent and the percentage improvement in leaflet understanding (Fig.  4 ).

Linear regression for the percentage increase in total score achieved in the knowledge test as a function of the overall rating of the educational material − given by each individual respondent ( a – b )

Our study presents a pioneering example of educational materials that community pharmacists can use as an additional tool when performing NMS. The role of community pharmacists has evolved for years in the US and some European countries, and now exceeds the traditional dispensing of medicines; however, in Poland, the process of implementing patient-centred approaches including structured counselling or medicine reviews has generally been very slow. For example, an NMS was only officially introduced in January 2023 [ 4 ]. Pharmacists attribute the reluctance to implement the service to the low availability of supporting materials, together with the need to develop relationships with GPs and the lack of payment structure.

Our findings indicate that the prepared leaflets successfully informed patients about their medications, with an approximately 35% higher score in the POST-TEST. Such evidence-based and critically-evaluated educational materials can support medication adherence by helping the patient make the decision to take medicines, and empower management of chronic therapy, as demonstrated in other studies on patients with asthma, diabetes or rheumatoid disorders [ 17 , 18 , 19 ]. As adherence is best ensured by multifaceted interventions, patient education should be accompanied by other approaches e.g., simplification of treatment regimens, and communication between patients and their health care professionals, follow-up and monitoring [ 10 ].

Each registered medication provides an information insert in its package, i.e. the PIL, which includes relevant data for use. Worryingly, only a third of patients fully understand the leaflet, while less than half usually read it [ 20 ], thus raising concerns of impaired disease management and reduced medication adherence. The materials proposed in our survey have been designed to support education about new medication, and feature simplified language and content. The latter covers various topics, including the basic and crucial aspects of blood pressure monitoring and HTN therapy management, as well as basic data on the product such as dosage, mechanism of action, indications, side effects, special warnings, information for particular groups of patients including pregnant or nursing mothers, special warnings and precautions.

Instead of sections introducing recommended dose and dosage schedules, the material provides a space that can be completed by the pharmacist according to the GP’s recommendations to indicate the dosage for an individual user. Many patients indicate that anxiety arising from reading about potential side effects can influence their withdrawal from treatment or reduce adherence [ 20 ]. Hence, the section introducing medication side effects has been shortened, with the assumption that the pharmacist can use additional materials for healthcare professionals e.g. SmPC, to provide a more personalised service when counselling the patient.

The first finding is that the material significantly improved patient knowledge about the hypotensive medication. This was true for all items except question no 6, introducing the situations where the patient should stop taking the drug immediately. Interestingly, the respondents were more likely to indicate that the patient must not discontinue the medication under any circumstances (60%), rather than discontinue when experiencing any of the noted serious side effects (swelling of the face, lips, mouth, tongue or throat, difficulty in breathing). In addition, the percentage of correct answers did not increase significantly after learning the material, emphasizing the need to discuss this aspect of drug safety with patients rather than provide written materials.

This was also true regarding awareness of the most frequent adverse effects of hypotensive medication. Patient knowledge about the side effects of hypotensive medication was relatively poor – even after reading the leaflet (≈ 50% of correct answers in POST-TEST), compared with the other sections. For example, asthma was regarded as the most frequent adverse event for ACEI (33%), probably due to mistakenly associating dry cough with asthma; this item could be explained more clearly by the health care professional. In addition, 10% indicated that oedema (swelling) was an adverse event for the thiazide/thiazide-like diuretics, which might indicate a misunderstanding in the mechanism of action: diuretics increase excretion of water and sodium by the kidneys, which can reduce oedema and lower blood pressure.

Although the respondents did not require any history of HTN to take part in the current survey, the participants were sorted into hypertensive and normotensive subgroups for analysis. Among the former, the median time for hypotensive therapy (since the diagnosis) was calculated as eight years. Interestingly, the comparative analysis did not reveal any significant differences in basic knowledge, i.e. before learning the material, regarding the rationale for hypotensive therapy, proper usage, overdosage or precautions for the hypotensive medicine. The analysis did not include any questions regarding mechanisms of action or side effects, which were specific to individual therapeutic groups, but focused on the basic rationale for anti-hypertensive therapy and general rules for its proper management.

The HTN patients only obtained higher scores when they were asked about the proper drug supply (swallowing with at least half a glass of water, question no 10). Surprisingly, they provided incorrect responses to question 1, i.e. that the hypotensive drug “sometimes lowers and sometimes decreases BP” (question no 1) (11%), question 2, i.e. what to do when missing a dose (38.4%), or question 6, when experiencing serious side effects (65%) (see above). In addition, some respondents would give their drug to the other person experiencing the same symptoms (question 12) (7.1%). These gaps in patient knowledge about medication can result in poor medication adherence, which is a well-recognized contributing factor of uncontrolled hypertension [ 21 ]. This is supported by studies indicating less than 50% of adherence to treatment, expressed as proportion of days covered, in as many as half of the cohort of patients [ 22 ]. This concerns especially first-line pharmacotherapy agents like thiazide/thiazide-like diuretics and spironolactone [ 23 ], where the most common reasons for withdrawal could be adverse effects of medication or impaired quality of life [ 24 ].

It is important to emphasise that our survey did not aim to assess the direct impact of the designed educational material on medication adherence. Nevertheless, recent data from hypertensive patients provide a good evidence that higher health literacy can be associated with better medication adherence, and even blood pressure control [ 25 ]. As such, regular patient education and counselling may address the gaps in knowledge indicated among the HTN patients in the present study, thus assisting them in making informed decisions regarding their care, and improving adherence. In general, this also highlights the need to involve Polish pharmacists in patient-centred activities.

The overall appraisal of the proposed material (amount of information, its presentation, readability) was positive. The language was checked and revised for better clarity and readability before the observational study. The participants had an opportunity to give their feedback regarding overall comprehensibility of the material. Some concerns regarded the terminology, and terms perceived as too technical were reworded; for example, ‘electrolytes’, were replaced by ‘potassium level’ or ‘sodium level’ as appropriate; the term for gout was explained by additional colloquial terms for this disease in Polish.

Interestingly, while overall appraisal was not influenced by covariates such as age, gender, education or history of HTN, respondents who gave higher ratings for the material tended to obtain better scores in the knowledge test. This result is in line with previous studies, where the participants claimed to have never ‘bothered’ to read the information included in the PILs for anti-hypertensive or diabetic drugs; their criticisms concerned the limited usefulness of the PIL due to poor readability (e.g., small font size), legibility, length, design, appropriacy of the content, and difficulty of technical language [ 19 ]. This might explain, at least partially, poor disease insight and non-adherence to HTN management [ 26 ]. The current observations also underline the need for comprehensive and “patient-friendly” educational leaflets as part of a wide spectrum of intervention tools aimed at counselling chronically-ill subjects.

The designed educational material was then used to train licensed Polish pharmacists. The six-hour online courses were performed by the present authors in cooperation with four Polish medical universities (Poznan, Lodz, Krakow, Lublin) and the Supreme Pharmaceutical Chamber and Polish Pharmaceutical Society. A total of 4000 pharmacists completed the certified course to perform the New Medicine Service. The course was aimed to (a) introduce the New Medicine Service as a form of pharmaceutical consultation; (b) present the standard operating procedures (SOP), together with the algorithm of service and proposed documentation; (c) present educational strategies for improving patient knowledge about diseases and treatment, including anti-hypertensive medications. The participants reported that they found the proposed material useful for effectively educating hypertensive patients about their disease and pharmacotherapy. Further studies have been planned to design and evaluate other materials that can be used by pharmacists to inform patients.

Limitations

The study has some limitations. The detailed analysis concerned only two subgroups of patients: those evaluating educational material for ACEI and for thiazide/thiazide-like diuretics. The materials concerning the remaining groups of antihypertensive agents (i.e., beta-blockers, calcium receptor antagonists and angiotensin type 2 receptor antagonist) were designed based on a similar scheme, including the language and layout. Also, many of the respondents had completed a high level of education (up to 42% of subjects); however, our findings do not indicate that education, or other demographic factors, influenced the final outcome in the survey.

Conclusions

The role of the pharmacist in caring for hypertensive patient encompasses medication management, education and counselling. This may concern self-monitoring of blood pressure, dietary modification, regular physical activity, as well as adherence to pharmacological treatment recommendations. Provision of adequate, appropriate and effective written educational materials, when integrated with other educational tool and interventions, and in cooperation with health care professionals, might increase the chance of successful disease management.

The materials designed for the present study successfully improved patient knowledge about anti-hypertensive medications, and were positively appraised with regard to their readability, sufficiency of provided information, comprehensibility and presentation. Polish and English language versions of the materials can be downloaded from the national website to support patient-centred activities performed by community pharmacists. However, our findings also indicate that patients with a history of HTN may have gaps in their knowledge about the disease and the treatment, indicating the need for more effective involvement by Polish pharmacists. Particular effort should be put into educating and counselling the patient about the safety profile of anti-hypertensive medications, and presenting management strategies for situations where they might experience any serious and/or life-threatening side effects. In Polish community pharmacies, these activities might be performed during drug dispensing, or as a part of an NMS or other pharmaceutical care services outside the dispatch room. However, the latter needs further financial support by the Polish government to make it a universal service.

Data availability

Data generated or analysed during this study are included in this published article and its supplementary information files.

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Acknowledgements

The authors gratefully acknowledge the assistance of Professor Tomasz Piekot from Plain Polish Lab (University of Wroclaw), in the evaluation of the readability of the language.

This work was supported by the Medical University of Lodz [503/3-011-02/503-31-002].

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Magdalena Jasińska-Stroschein, Paulina Stasiak & Sylwia Cholewa

Department of Social Pharmacy, Jagiellonian University Medical College, Medyczna 9, Kraków, 30-688, Poland

Justyna Dymek

Department of Humanities and Social Medicine, Medical University of Lublin, Al. Racławickie 1, Lublin, 20-059, Poland

Mariola Drozd

Hospital Pharmacy, Independent Public Health Care Institution in Szczebrzeszyn, Zygmunta Klukowskiego 3, Szczebrzeszyn, 22-460, Poland

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Council of District Chamber of Pharmacy, Zeromskiego 77/6, Warsaw, 01-882, Poland

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Lubusz Pharmacy Chamber Council, Wojska Polskiego 37, Pharmacy, Zielona Góra, 65-077, Poland

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Pharmacy Practice and Pharmaceutical Care Division, Department of Pharmaceutical Technology, Poznan University of Medical Sciences, Grunwaldzka 6, Poznan, 60-780, Poland

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MJ-S and MW-N designed the work; SCh, PS and MN performed data acquisition; MJ-S analysed and interpreted obtained data; OS, JD, MD, AJ, and AS designed the formularies and educational materials; MJ-S and MW-N have drafted the work. All authors read and approved the final manuscript.

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Correspondence to Magdalena Jasińska-Stroschein .

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Jasińska-Stroschein, M., Dymek, J., Drozd, M. et al. An evaluation of written materials for supporting hypertensive patient education and counselling when performing a new medicine service in Poland. BMC Med Educ 24 , 521 (2024). https://doi.org/10.1186/s12909-024-05523-x

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Motor polyradiculoneuropathy as an unusual presentation of neurobrucellosis: a case report and literature review

• Ahmad Alikhani 1 ,
• Noushin Ahmadi 1 ,
• Mehran Frouzanian 2 &
• Amirsaleh Abdollahi 2  

BMC Infectious Diseases volume  24 , Article number:  491 ( 2024 ) Cite this article

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Brucellosis, a zoonotic disease caused by Brucella species, poses a significant global health concern. Among its diverse clinical manifestations, neurobrucellosis remains an infrequent yet debilitating complication. Here, we present a rare case of neurobrucellosis with unusual presentations in a 45-year-old woman. The patient’s clinical course included progressive lower extremity weakness, muscle wasting, and double vision, prompting a comprehensive diagnostic evaluation. Notable findings included polyneuropathy, elevated brucella agglutination titers in both cerebrospinal fluid and blood, abnormal EMG-NCV tests, and resolving symptoms with antibiotic therapy. The clinical presentation, diagnostic challenges, and differentiation from other neurological conditions are discussed. This case underscores the importance of considering neurobrucellosis in regions where brucellosis is prevalent and highlights this rare neurological complication’s distinctive clinical and radiological features. Early recognition and appropriate treatment are crucial to mitigate the significant morbidity associated with neurobrucellosis.

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Introduction

Brucellosis, caused by Brucella species, is an infectious ailment recognized by various names such as remitting, undulant, Mediterranean, Maltese, Crimean, and goat fever. Humans contract it through the consumption of unpasteurized milk and dairy products, undercooked meat, or skin contact with infected livestock [ 1 , 2 , 3 ]. Various Brucella species, including Brucella melitensis (primarily sourced from sheep and goats), Brucella abortus (found in cattle), Brucella suis (associated with pigs/hogs), and Brucella canis (linked to dogs), can lead to illness in humans [ 3 , 4 , 5 ]. While brucellosis in humans is rarely fatal, it can lead to disability [ 6 ]. Brucellosis ranks among the most prevalent zoonotic diseases, impacting approximately 500,000 individuals yearly [ 7 ]. The combined estimate for the prevalence of brucellosis was 15.53% [ 8 ].

Neurobrucellosis, a rare complication of systemic brucellosis, can occur in adult and pediatric cases [ 9 ], and can manifest at any stage of the disease. They can present in various clinical presentations such as meningitis, encephalitis, meningoencephalitis, myelitis, radiculopathy, polyneuropathy, stroke, cerebral venous thrombosis, and occasionally psychiatric symptoms [ 10 , 11 ]. Although the mortality rate is low, patients often experience persistent neurological issues following neurobrucellosis [ 12 ]. Studies suggest that around 20% of neurobrucellosis cases result in lasting neurological problems [ 13 ]. It is uncommonly considered in cases of meningoencephalitis or polyneuropathy, making it crucial for clinicians to have a high suspicion of it in patients displaying such symptoms, especially in endemic regions, to prevent severe clinical outcomes. In this study, we present a rare case of neurobrucellosis with unusual clinical presentations in a patient admitted to our center.

Case presentation

A 45-year-old female patient, with no prior medical history, presented to our center after enduring distal pain and weakness in her lower extremities for approximately 10 months. Over this period, the muscle weakness progressed, affecting proximal muscles of upper and lower limbs, and leading to a substantial weight loss of 25–30 kg despite maintaining appetite. Initially dismissive of the limb weakness and pain, the patient sought medical attention six months after symptom onset due to the worsening symptoms and gait impairment. Over the subsequent four months, she underwent multiple medical evaluations and tests, including a lumbar X-ray. Following these initial investigations and due to low serum vitamin D levels, vitamin D and calcium supplements were prescribed, and lumbar MRI were requested for further evaluation. (Table  1 )

Upon referral to an infectious disease specialist, the patient’s history of local dairy consumption and positive serologic test for brucellosis prompted treatment with rifampin and doxycycline. However, the patient’s condition deteriorated significantly five days after starting this treatment. She experienced severe gait disorder, lower extremity weakness, diplopia, and blurred vision that had gradually worsened over two weeks. Subsequently, she presented to our center for further assessment.

Upon admission, the patient was unable to stand even with assistance and exhibited diplopia. Cranial nerve examination revealed no abnormalities, except for the II, III, and IV cranial nerves, which could not be thoroughly examined due to the presence of diplopia. The patient tested negative for Kernig and Brudzinski signs. There were no palpable supraclavicular or inguinal lymph nodes. Physical examinations of the breast, axilla, lungs, heart, and abdomen were unremarkable. Muscle strength was reduced in the lower extremities, and deep tendon reflexes of the knee and Achilles were absent. The plantar reflex was non-responsive, and certain reflexes, including biceps, triceps, and brachioradialis, were absent despite normal movement of the upper extremities. Anorectal muscle tone and anal reflex were normal.

Further investigations included normal urinalysis and abdominal and pelvic ultrasound. Chest X-ray and brain CT were also ordered. Due to the patient’s refusal of lumbar puncture, a suspicion of neurobrucellosis led to the initiation of a three-drug regimen (Table  2 ); ceftriaxone 2 g IV twice daily, rifampin 600 mg PO daily, and doxycycline 100 mg PO twice daily. The ophthalmology consultation did not reveal any ocular pathology, and the neurologist ordered brain MRI and EMG-NCV tests. The patient’s brain MRI was unremarkable, but EMG-NCV showed sensory and motor polyneuropathy. Consequently, intravenous immunoglobulin (IVIG) therapy was initiated at a daily dose of 25 g. After five days, the patient consented to lumbar puncture, confirming the diagnosis of brucellosis. Co-trimoxazole 960 mg PO three times daily was added to her treatment regimen, and IVIG therapy continued for seven days. Following a 3-day course of IVIG treatment, the neuropathy symptoms showed significant improvement. By the seventh day, there was a notable enhancement in limb strength, particularly in the upper limbs, reaching a 2-point improvement. After undergoing three weeks of intravenous therapy, the patient transitioned to oral medication. Despite disagreement regarding the necessity of a second CSF examination, the patient was discharged with a prescription for doxycycline, rifampin, and cotrimoxazole. Upon discharge, the patient could walk with the aid of a walker. However, within a month, a slight limp persisted, and by the third-month post-discharge, all symptoms had resolved completely.

Brucellosis is widely spread globally, with more than half a million reported human cases annually [ 14 , 15 ]. Countries like Kenya, Yemen, Syria, Greece, and Eritrea have experienced high rates of brucellosis. The situation of brucellosis has shown signs of improvement in many epidemic regions. However, new areas with high occurrences of this disease continue to emerge, particularly in Africa and the Middle East, where the incidence of the disease varies [ 16 ]. Brucellosis is linked to various neurological complications collectively known as neurobrucellosis, which is an uncommon condition, and only a few cases have been reported globally [ 17 , 18 , 19 , 20 , 21 ]. Our patient exhibited muscle weakness, polyneuropathy, and inability to walk, which are often not regarded as indicative of a brucella infection by many physicians. While the diagnosis of neurobrucellosis can typically be confirmed through classical clinical signs, radiological examinations, and serological tests, patients might not always display typical symptoms, as observed in our case. Hence, in regions where the disease is prevalent, clinicians should maintain a high level of suspicion if patients do not show improvement with standard treatment. Additionally, the lack of awareness among healthcare professionals and limited access to advanced laboratory facilities can lead to misdiagnosis.

The frequent manifestations of neurobrucellosis include meningitis or meningoencephalitis. Typically, it starts with a sudden headache, vomiting, and altered mental state, which can progress to unconsciousness, with or without seizures [ 22 ]. Additionally, brucellosis can lead to several central nervous system issues such as inflammation of cerebral blood vessels, abscesses in the brain or epidural space, strokes, and cerebellar ataxia. Peripheral nerve problems may include nerve damage or radiculopathy, Guillain-Barré syndrome, and a syndrome resembling poliomyelitis [ 13 ]. Nevertheless, the patient exhibited no indications of seizures, brain hemorrhage, stroke, or focal neurological impairments. Instead, the observed symptoms were consistent with radiculopathy and muscular weakness.

In only 7% of neurobrucellosis cases, the peripheral nervous system is affected. Remarkably, our case falls within this rare category, adding to its unique and intriguing nature. Previous case studies have detailed polyradiculoneuropathies, manifesting as acute, subacute, or chronic forms [ 23 ]. Our patient’s condition aligns with chronic motor polyradiculopathy. Interestingly, some of these cases exhibit sensory deficits or resemble Guillain-Barré syndrome [ 23 , 24 ]. In a prior case study conducted by Abuzinadah and colleagues, a comparable case was described as a subacute motor polyradiculopathy. The patient exhibited gradual bilateral lower limb weakness over three weeks, eventually leading to loss of mobility within seven weeks. Brucella was isolated from the cerebrospinal fluid after a two-week incubation period, and high antibody titers were detected in the patient’s serum [ 23 ]. In another study led by Alanazi and colleagues, a 56-year-old man initially diagnosed with Guillain-Barré syndrome experienced worsening symptoms despite appropriate treatment. Following plasma exchange and antibiotics, his condition improved temporarily, only to relapse, raising suspicion of chronic inflammatory demyelinating polyneuropathy, and treatment with IVIG resulted in substantial improvement. Upon further investigation, he was diagnosed with brucellosis [ 24 ]. This highlights the importance of recognizing GBS-like symptoms in regions where brucellosis is prevalent, prompting clinicians to consider the possibility of brucellosis in their diagnosis.

While there are no established criteria for diagnosing neurobrucellosis [ 25 ], certain articles have suggested several methods for its diagnosis. These methods include the presence of symptoms aligning with neurobrucellosis, isolating brucella from cerebrospinal fluid (CSF) or detecting a positive brucella agglutination titer in CSF, observing lymphocytosis, elevated protein, and decreased glucose levels in CSF, or identifying specific diagnostic indicators in cranial imaging such as magnetic resonance imaging or computed tomography (MRI or CT) [ 13 , 26 , 27 , 28 ]. Neurobrucellosis does not present a distinct clinical profile or specific CSF characteristics. Imaging observations of neurobrucellosis fall into four categories: normal, inflammatory (indicated by granulomas and enhanced meninges, perivascular spaces, or lumbar nerve roots), alterations in white matter, and vascular changes [ 29 ]. We suspected neurobrucellosis based on the patient’s clinical symptoms, geographic correlation, high brucella agglutination test titers in both cerebrospinal fluid and blood, symptom resolution following treatment, and the exclusion of other common causes.

In Iran, one differential diagnosis often confused with brucellosis is tuberculosis, as both chronic granulomatous infectious diseases are prevalent here [ 30 , 31 ]. Neurobrucellosis and tuberculosis exhibit significant similarities in clinical symptoms, lab results, and neuroimaging findings. However, deep grey matter involvement and widespread white matter lesions seen in neuroimaging, resembling demyelinating disorders, appear to be distinctive to brucellosis [ 32 ]. There is a noticeable similarity in the clinical symptoms and laboratory findings of brucellosis and tuberculosis [ 33 ]. It is crucial to thoroughly eliminate the possibility of tuberculosis in any suspected or confirmed brucellosis cases before starting antibiotic treatment.

Due to the challenging nature of treating brucellosis and the likelihood of experiencing relapses, it is crucial to provide an extended course of treatment [ 27 ]. This treatment approach should involve a combination of antibiotics that can easily penetrate the cell wall and effectively reach the central nervous system [ 27 , 34 ]. Neurobrucellosis is treated with 3 to 6 months of combination therapy comprising doxycycline, rifampicin, and ceftriaxone or trimethoprim-sulfamethoxazole [ 35 ], similar to the treatment administered to our patient. For patients allergic to cephalosporins, quinolones are recommended, which are considered to be effective in treating brucellosis [ 36 , 37 ]. In complicated situations such as meningitis or endocarditis, streptomycin or gentamicin is administered in the initial 14 days of treatment, in addition to the previously mentioned regimen. Timely and proper treatment results in a positive prognosis, with a less than 1% fatality rate for such complex cases [ 17 , 38 ]. Our patient experienced a highly positive outcome following the prescribed therapy. Initially relying on a walker, a slight limp endured for a month, and by the third month after discharge, all symptoms completely disappeared.

The present study underscores the significance of considering neurobrucellosis as a potential diagnosis when evaluating muscle weakness and radiculopathy, especially in regions where the disease is prevalent. A comprehensive patient history, precise clinical examination, positive serology in blood or cerebrospinal fluid, imaging results, or cerebrospinal fluid analysis can contribute to establishing a conclusive diagnosis.

Data availability

The datasets generated and/or analysed during the current study are not publicly available due to our team’s privacy concerns but are available from the corresponding author on reasonable request.

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A.A oversaw and treated the case, including the entire revision process. N.A. contributed to the article’s composition. M.F. authored the discussion section, along with the complete revision. AS.A. played a role in crafting the case report discussion and participated in the entire revision process.

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Alikhani, A., Ahmadi, N., Frouzanian, M. et al. Motor polyradiculoneuropathy as an unusual presentation of neurobrucellosis: a case report and literature review. BMC Infect Dis 24 , 491 (2024). https://doi.org/10.1186/s12879-024-09365-2

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• Neurobrucellosis
• EMG-NCV tests
• Polyradiculoneuropathy
• Antibiotic therapy
• Intravenous immunoglobulin therapy
• Zoonotic disease
• Gait disorder
• Lower extremity weakness
• Blurred vision

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Exploring the consent process among pregnant and breastfeeding women taking part in a maternal vaccine clinical trial in Kampala, Uganda: a qualitative study

• Agnes Ssali 1 ,
• Rita Namugumya 2 ,
• Phiona Nalubega 2 ,
• Mary Kyohere 3 ,
• Janet Seeley 4   na1 &
• Kirsty Le Doare 3   na1  

BMC Medical Ethics volume  25 , Article number:  57 ( 2024 ) Cite this article

Metrics details

The involvement of pregnant women in vaccine clinical trials presents unique challenges for the informed consent process. We explored the expectations and experiences of the pregnant women, spouses/partners, health workers and stakeholders of the consent process during a Group B Streptococcus maternal vaccine trial.

We interviewed 56 participants including pregnant women taking part in the trial, women not in the trial, health workers handling the trial procedures, spouses, and community stakeholders. We conducted 13 in-depth interviews and focus group discussions with 23 women in the trial, in-depth interviews with 5 spouses, and 5 women not in the trial, key informant interviews with 5 health workers and 5 other stakeholders were undertaken.

Decision-making by a pregnant woman to join a trial was done in consultation with spouse, parents, siblings, or trusted health workers. Written study information was appreciated by all but they suggested the use of audio and visual presentation to enhance understanding. Women stressed the need to ensure that their male partners received study information before their pregnant partners joined a clinical trial. Confidentiality in research was emphasised differently by individual participants; while some emphasised it for self, others were keen to protect their family members from being exposed, for allowing them to be involved in research. However, others wanted their community participation to be acknowledged.

We found that pregnant women make decisions to join a clinical trial after consulting with close family. Our findings suggest the need for an information strategy which informs not only the pregnant woman, but also her family about the research she is invited to engage in.

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Groups are considered vulnerable in the research setting when they have a compromised ability to protect their interests and provide informed consent. Pregnant women may have agency to protect their own interests and give their own informed consent in clinical vaccine trials [ 1 ], but they are also responsible for protecting the interests of the growing foetus, who cannot consent to research or may have a unique susceptibility to risks. There are additional distinctive issues that a pregnant woman, and her family, may consider regarding the risks and benefits of participation in clinical research, resulting from the interdependence between mother and foetus. In a patriarchal system, she carries a child who is the continuation of the spouse’s blood line [ 2 ]. So, decisions about the foetus are not hers alone to make. Even though the interests of the mother and the foetus are conceptually separable, in practice, they are considered together.

Pregnancy and infancy are both periods of increased vulnerability to infection [ 3 ]. Vaccinating women during pregnancy has been shown to be effective in providing protection against several infections in pregnant women, while also providing protection for the foetus and the infant during early life [ 4 ]. Although a small number of vaccines are recommended for routine use during pregnancy, there are many vaccines that have sufficient safety data to support their use in pregnant women in appropriate circumstances [ 5 ]. Despite the benefits, a lack of vaccine confidence remains a significant barrier to vaccine uptake among pregnant women worldwide. This has been a particular challenge during the COVID-19 pandemic, which has seen low rates of vaccine uptake among this cohort [ 6 , 7 , 8 , 9 , 10 ] .

We have recently shown that in Uganda, vaccine uptake in pregnant women was influenced by the awareness of the vaccine, disease severity and susceptibility, vaccine benefits, side effects and risk of harm during pregnancy, history of previous vaccination, and recommendation from healthcare professionals [ 11 ]. We found that there was a need to include the wider community in vaccine discussions to increase confidence in existing vaccines. Communicating such information clearly is even more vital during trials of investigational vaccines. Given the benefits of the protection afforded by vaccination for pregnant women there is a growing awareness that pregnant women should be included early in clinical trials. How information on the trial is best provided is critical to vaccine confidence both for the woman herself, her family and for the wider community.

An important part of the sharing of information is the informed consent process. Many factors can influence a research participant’s understanding and experience of the information provided, such as the type of study, the cultural setting, local beliefs and customs, as well as the participant’s language, religion, level of education, and socio-economic status [ 12 ]. In a maternal vaccine trial, women in different socioeconomic situations and with different health-care experiences may have very different information needs about the disease that the vaccine is protecting against and the safety and efficacy of the vaccine [ 13 ].

As noted above, a pregnant woman is not necessarily the sole decision-maker for matters affecting the foetus she carries. While care should be taken to ensure that decision-making about participation in a trial does not undermine the autonomy of pregnant women, not planning for third-party consent could be a major encumbrance for research. In this study we explored the expectations and experiences of pregnant women of the consent process in Uganda. We also explored the attitudes and experiences of health workers and partners/spouses of the women and other community stakeholders. Our aim was to learn what information is required during the consenting process and in what format, to allow pregnant women and their family, to make informed decisions before joining a clinical trial.

Methodology

Study design.

This cross sectional exploratory qualitative study was embedded in an ongoing maternal vaccine clinical trial (CTA 0212) conducted by Makerere John Hopkins University Uganda limited (MUJHU) in Kampala, Uganda.

The clinical trial in which the study was conducted was a phase II study of a multivalent vaccine against the Group B streptococcus (GBS) capular polysaccharide (CPS) in pregnant HIV-infected and uninfected women. For the trial women were enrolled from two main health facilities, Kawempe national referral hospital and Kisenyi health centre IV located in the Centre of Kampala city (the study details are available at https://clinicaltrials.gov/study/NCT04653948?locStr=Uganda&country=Uganda&term=maternal%20vaccine&rank=2 ).

The study was conducted at Kawempe specialised national referral hospital for gynaecology and obstetrics. It is located within 4 km from the city centre in one of the administrative divisions of Kampala city. The division has several neighbouring communities including Mulago, Kamwokya, Komamboga, as well as Kawempe where most of the stakeholders interviewed lived. The hospital receives women from all over the country who may be referred, as well as serving nearby communities.

Theoretical background to the sampling

The theoretical underpinning used in this study is the socio ecological model of health [ 14 , 15 ]. The model portrays the relational influences on an individual showing how the family and wider society may impact on an individual’s actions and decisions [ 16 ]. In this study we view the woman as being influenced by her close family relations, the family belongs to a community which has cultural beliefs and social norms. In this study the women could legally make their decisions from the age of 18 years; however, because they were pregnant, the decision to enrol in a maternal vaccine trial was influenced by others, notably their family.

Recruitment

Pregnant women were recruited from the hospital after administrative permission and individual consent had been obtained. Pregnant women who were taking part in the Group B Streptococcus vaccine trials were approached following contact from the clinic research team. Interested participants were contacted by the social scientists by phone and were informed about the study and requested to come to the hospital for detailed information during their follow up visits at the antenatal clinic. The social science researcher identified pregnant women already enrolled in the trial who were returning for their second follow up visit at the clinic. Some were pregnant while for others it was a post-natal visit. These visits did not include extensive clinical procedures and therefore allowed time for the interviews or discussion.

The inclusion criteria for this qualitative study were any pregnant woman aged 18–39 years at any gestation who was taking part in a maternal vaccine trial conducted by MU-JHU and willing to give consent to take part. The study also included breast feeding women in the same age bracket who was taking part in follow up of the trial. The social science team purposively sampled the pregnant women and breast-feeding women in different age brackets (18–24 years, 25–32 years, 33–39 years) from the lists provided by the data management team.

An additional group of women attending the same antenatal clinic at the referral hospital who were not in the clinical trial but had similar characteristics as those outlined in the clinical trial inclusion criteria, and willing to give consent were invited to participate in an interview. These women were purposely selected from those attending the antenatal visit to match the age of women in the trial 18–39 years. They were recruited through the antenatal clinic staff. A midwife introduced the qualitative study’s main objective and requested the women interested in discussing the study in detail to meet with the social scientists. The social scientists shared the details of the qualitative study and women who were willing to join and sign a consent form were invited to take part. The women were interviewed in a private area in the hospital space.

Partners to women were recruited with the support of their wives. The social scientists obtained the partners’ contacts from the wives and contacted them by phone and invited them to take part in the study after giving written informed consent. The partners were free to suggest their preferred location for the interview.

Community stakeholders were mobilized with the support of a Community Advisory Board (CAB) member. The CAB member provided the research team with contact information for the stakeholders, who were drawn from community leadership structures, and included political, cultural, religious, and civic leaders. They were contacted by phone by the social scientists and later visited for a discussion of the participant information document. The stakeholders were interviewed at the time and place of their choosing after giving consent. The research ethics committee member was purposely contacted and invited to take part in the study.

The social science team purposely approached healthcare workers who were involved in the trial processes and requested their participation in the study. The health care workers were selected because they obtained consent from the women, made home visits to the participants, did the vaccination procedure, and offered treatment and care for the participants.

Data collection

Data collection took place from October 2022 to Feb 2023. The women in the trial either took part in a semi-structured Individual Interview (IDI) or a Focus Group Discussion (FGD). In-depth interviews were conducted to explore individual real-life experiences of the women. FGD were conducted among the women to explore the general community experiences of the informed consent process for maternal vaccines. The women who took part in the in-depth interviews did not take part in the FGDs. All the women were aged between 18 and 49 years. Insights from the stakeholders who included spouses, community leaders and health workers were gathered through in-depth interviews. By asking the different groups of respondents the same research questions we were able to explore the research questions from different perspectives [ 17 ].

Verbal permission to audio record the interviews was requested before conducting the interview. The interview guide for the IDI and FGD topic guide (see Supplementary File 1 ) included topics that included antenatal visit experiences, knowledge of vaccines in general and the specific vaccine they received, barriers and facilitators for taking part in the clinical trial, what the consent process involved, study information shared with them and the format of presentation, and decision making to join a clinical vaccine trial. The individual IDI lasted between 30 and 60 min. The FGDs lasted between 60 and 90 min. The interviews were conducted by two female social scientists. The FGDs were conducted by three female social scientists with one as an observer. The individual interviews and FGDs were conducted in English and Luganda languages depending on the preferred language of the individual and group. The interviews with women in and not in the trial were conducted in a private space at the hospital. The FGDs were conducted within the hospital in large office spaces. During the FGDs, participants were served a soft drink and a snack.

Stakeholders chose the place where the interview was held, some came to the hospital premises, while others were interviewed in their communities. The health workers were interviewed at the study offices at Mulago hospital and Kawempe referral hospital. The interviews with the stakeholders and health workers lasted between 30 and 50 min The first author listened to a sample of audio-recordings throughout the study to follow up and discuss probes and emerging findings during weekly debriefing sessions.

Data management and analysis

Once a participant was interviewed and after an FGD had been conducted, the recording was uploaded on an encrypted computer. The two social scientists who collected the data did the transcribing and translation. Luganda transcripts were translated and transcribed by the same social scientist into English because the research team members were all conversant with both languages and had skill to do this. The two social scientists transcribed each other’s interview so that they transcribed an interview they did not conduct. This was helpful in generating questions to ask each other about the findings, check reliability and improve interviewing skills throughout the duration of data collection. Listening to each other’s recording and the lead researcher listening to the recordings led to the writing of analytical memos on the themes from the data, which were useful during analysis.

All the transcripts were anonymized. Identification numbers were assigned to every transcript, and these were securely saved on the MRC server in Entebbe.

Thematic data analysis was employed for this study [ 18 ]. The team started with familiarizing themselves with the data by going through several transcripts each, and actively looking for patterns from the data which led to codes and they compiled a code book which was then used to code all the data sets. During the analysis, the team began by discussing the first five transcripts to come up with codes for the data set, this was a continuous process after the first five transcripts until the team members agreed that no unique codes were emerging. The discussion of codes followed the questions in the interview guides, the research team agreed to code freely to allow for topics which emerged during the interview.

After developing the codes and the codebook, data were exported to NVivo 12 an electronic qualitative data analysis software to support the analysis process. Data analysis was both deductive following the questions in the topic guides and inductive from within the data. The themes identified include: perceptions about vaccines in general, perceptions of the vaccine used in the overarching clinical trial, experiences at the antenatal clinic, decision making, barriers and facilitators to enroll in a maternal clinical trial and discussion of the elements of the consent process (study information and presentation, role of an impartial witness, confidentiality, compensation, and strategies for information sharing).

Ethics approval and consent

After mobilizing the study participants, the research team provided detailed information in English or Luganda, the local language, depending on the language preferred by the participant. Participants were given an opportunity to ask questions about the planned study. All the participants gave their individual informed consent by giving written consent. If a participant was not able to read and write, the researchers involved a peer attending at the clinic on the same day, or male partner if he had escorted his wife to the clinic and could read and write. The partner or peer were part of the information sharing session and the peer or partner signed as a witness after the volunteering participant had given a thumb print.

The quotations are assigned identifiers, FGD/IDI for mode of data collection. For each FGD we then provide, its number, and age of participants. WIT is an abbreviation for `Women In Trial’, WNT is `Women Not in the Trial’. IDIs are shown by the participant identifier and age.

Fifty-six respondents took part in this study, these included thirty-six pregnant or breastfeeding women, 5 women not in the trial, 5 partners to women in the trial, 5 health workers (1 male, 4 female) and 5 community stakeholders (2 male, 3 female). The pregnant and breast-feeding women were aged 18–39 years although most were aged below 25 years. Male partners were older, aged 30–49 years. The stakeholders were aged between 30 and 50 years.

All the participants had some school education. Occupations of the women included farming, small businesses such as hair salons, and some women said that they were `housewives’. The stakeholders were leaders in their communities, one of whom was a practicing health worker. The demographic information of those who took part is shown in Table  1 .

Health workers were aged 28–33 years, they had experience of conducting maternal clinical trials for a duration of between 2 and 4 years. The health workers had attained diploma and degree level qualifications.

The consenting process

For most pregnant women the decision to join the trial involved the husband as a prerequisite to joining because she was carrying the pregnancy of the male partner. All the women reported how they were informed about the research and said that they were usually given a week to discuss the study document with their family members. A woman taking part in a focus group discussion:

The time they gave me the study information, my husband was working in a far place so I could not consent on my own. They gave me information sheets that I went with at with home. When my husband came back, I showed him the sheets and later he allowed me to participate. (FGD-002- [30–35 years]-WIT).

Another woman in another discussion said she had made the decision herself, after receiving additional information:

For me, like I told you that the first time I came I did not understand, I came back again, and they explained then I understood and decided to join, for me, l asked my heart. (FGD-003- [25–29 years] -WIT).

During an interview a woman, who was not in the trial, explained the rationale for seeking her partner’s consent to take part:

I would follow his opinion because I might be wrong, if we both agree there would not be any problems, but if he disagreed, I would follow what he[husband] says. Because I’m his responsibility, that’s why if I talk to him about it and he says no, I can’t do otherwise, his opinion is very important in my decision making. (IDI-004-WNT).

The health workers’ responses were similar to what the women had shared, the health workers emphasised the importance of sharing key study information and letting the women share study information with their networks such as partners/husbands.

Other stakeholders observed that informing partners was important. A village health team member commented that they thought that: ‘ Most pregnant women don’t disclose to their husbands that they are participating in clinical trials. When their partner finds out that they are participating in clinical trials, it may lead to domestic violence . ’

Most pregnant women consented to take part in the trial for the benefit of themselves and their unborn child. The women had the belief that they would give birth to healthy babies without infections, an example, ‘Because I saw that, the way they explained the vaccination just like I told you my baby and I were going to be safe’. (IDI- -002-WIT).

When asked about the consent procedure many respondents mentioned risks and benefits of the study, purpose of the study, side effects of the vaccine and what may happen if a participant wanted to withdraw from the research, as being very important pieces of information that every participant needed to know.

A male participant mentioned the need to present information about safety:

I would like to know the information on the safety of that research. I would prefer hearing information like “a certain number of pregnant women participated in this research and both mother and baby are all safe.” That kind of information must be approved by the Ministry of Health. (IDI- -001-MALE PARTNER).

There was a consensus among those interviewed, and in the discussion groups, that the information shared needed to be clear, and free from technical language. In addition, the information needed to be given by someone who understood the trial and who could answer any questions.

All the respondents stressed that participants in research must sign the consent form because it was to prove they understood the information and willingly consented to take part: ‘ It shows proof that you consented to take part in the study without being forced. Signing means that you agreed to take part without being forced’ . (FGD-001-[18–24 years]-WIT).

The women in the trial commented that providing consent is not uncommon in most transactions. One woman compared the process to the savings associations in their communities where a woman agrees to the terms of that group, when she becomes a member. She went on to explain why signing the consent form is important in research:

They [research participants] might get a challenge from elsewhere and they accuse the researchers saying “they even forced me to join the study” but if they completed that consent form and signed it very well, the researchers have proof and evidence on their side that that person agreed to take part and even signed the document, that is why we sign on those documents. (FGD-001-[18-24years]-WIT).

Several women who by now had babies reported that they had referred back to the information documents during the trial especially for procedures that had to be carried out on their babies. During the FGD with older women one woman noted that she had kept the study information document with her every time she visited the clinic:

For me I used to come with it in my bag every time I had a visit, I used to take my time reading it while waiting to see the doctors, it helped me follow through very well, I could tell that this is what they are doing at this stage, just to prove that what they are doing is what they taught me at the beginning . (FGD-002- [30-35years]-WIT).

Another mother referred to the document because she was being told to express breast milk:

For me when they told me to extract breast milk the very first time in the study, I asked the doctor why they were taking my breast milk, the doctor told me that all that information was explained to me during the information session before I joined the study… in brief that forced me to go back and look critically at the copy they gave me here, that’s how I understood that its true they had to collect breast milk on the first day I gave birth. (FGD-002- [30–35 years]-WIT).

A blood draw from the baby led another mother to refer to the study document:

I read it several times when they had just given it to me, then I kept it somewhere safe, I had seen everything even collection of breast milk on the first day, but what I didn’t see, was collecting blood from my baby, after two weeks they tell us to bring the baby and they take off a blood sample from their little hand, that really hurt me and I thought to myself ‘why do they take off all that blood from such a little baby’, I was puzzled; I went back and picked the paper and read it carefully to see whether it was in that paper, I found the information there and understood why the doctors did it. (FGD-002-[30–35 years]-WIT).

It was clear that many trial participants understood the significance of signing the consent form, as well as the importance of retaining the information sheet for future reference.

Comprehension of study information

The respondents were asked about the best practice for sharing study information. They mentioned several tools or ways that would enhance comprehension of clinical trial information. These included the use of short video clips, picture/poster presentation, recorded audio study information, study flyers and the use of trial participants providing study information with each other. They also suggested the use of media which may include radio and television and social media communication like Facebook and WhatsApp which could enhance understanding for both the literate and less illiterate participants.

The following FGD excerpt shows some suggestions from women aged 18–24 years:

P1: … If you also share comparisons of the women who get vaccinated and those who don’t get vaccinated, it can make the woman make an informed decision . P5: I think broad casting that information on a TV is beneficial. When a woman reaches the hospital, she can be watching that information on the TV before the health workers attend to her. P8: Most information now is passed on phone and TV. I think you can get a program on any media platform and share such information. Even when you come at the hospital, you can put up a billboard where you can put such information.

In an older age discussion group one woman commented:

Remember there are some of us who have good experience about this [vaccination], I think it can be very good if we share with other women and help them decide. You can also do that in the different villages, on different radio programmes, remember people listen to these radios, they can find this information there, and create awareness in the communities. (FGD-[30–35 years]-WIT).

Use of posters/photographs was mentioned by some women: `… yes, the photos can inform a person and the health care worker will explain to you where you don’t understand’ (IDI-002-WIT). A health worker also mentioned the value of visual methods:

You can use posters, use visual aids with the pictures of what you are trying to explain to them, because this person is not able to read, but they can see that the pictures are directing them to do this and that, so that they can understand, with arrows and different directions, I don’t know how to clearly explain but what I know is that this can really help. (KII-001- HEALTH WORKER).

Pictures on the information sheet were also suggested by a health worker:

We could draw some pictures on a sheet of paper may be as part of the information sheet (ICF) at the end, we include the benefits of participation in the study, we draw pictures of the baby being protected against the effects of the Group B Streptococcus infection, I think participants may be able to see the pictures and understand the information compared to the words they can’t read. (KII-004-HEALTH WORKER).

The same health worker mentioned the use of short video clips to enhance comprehension:

For the mother who can’t read and write we can put up short videos, because even if a mother can’t read and write but there is a short video that she is able to watch, I think it’s better for them instead of giving them an ICF which they can’t read, if it’s a video they can watch and understand the information being shared. (KII-004-HEALTH WORKER).

Sharing recorded study information using phones since many women now own phones, was also suggested.

Role of an impartial witness

We asked respondents to share their perspectives on the role of an impartial witness during the consenting process. The impartial witness, according to our study findings, was viewed by most respondents as a legal requirement to protect the person being researched and the researcher.

One woman during a FGD said that presence of an impartial witness benefited the researcher:

I think the witness is important in cases where that person who signed or put their fingerprint in agreement to participate in the study initially, later changes their mind about anything against the initial, they can ask the witness because they were around when that person agreed to participate in the study, and they can give evidence that that person was not forced to sign on that document. (FGD-002-[30–35 years]-WIT).

However, some participants did not think it was necessary to have a witness. They said that a witness may not always be reliable. To these women, understanding information is not limited to reading and writing by the volunteer. An example that was compared to bank transactions emphasizes the need for autonomy once a volunteer understands the language that is being used:

Many times, we go to the banks to sign documents with people who cannot write but there is an option of putting a thumb print. I think a witness can even reach a point and deny that she signed on your behalf. According to me, a witness is not important. (FGD-003-[25–29 years]-WIT).

The women in that discussion group went on to note that the independence and privacy of someone who does not read but understands what is read should be respected. ‘ Some things need to be hidden. I may have my own secrets that don’t require me to be with a witness during the consenting process’.

Finding the impartial witness is not always easy in some contexts and that would mean that an interested volunteer who understood the information shared would not enrol in the research:

…, getting a suitable witness is not easy, sometimes we use hospital staff, remember they also have things to do yet going to pull her out of their work for one hour, just to sit and listen to you. I think what we can do for some of those cases is we can give them some time to go home and look through that information, and if they have someone at home who is literate, they can even ask them for help, then when they come back it would be a quicker process for them. (KII-005 HEALTH WORKER).

The stakeholders and male partners had similar descriptions of a witness to those shared by most women, a witness was to prove that a study participant agreed to take part in a research study.

Compensation of study participants

Compensation for time is another important aspect of the informed consent process. Whereas most participants reported that it was important to compensate research participants, how research participants were to be compensated varied. The women reported they needed the money to help them in travel and they would use some of it to cater for some of their needs back home. For some women it was a reason to stay in the study.

The male partners felt it was important to compensate the women that participate in this research and mentioned it is an additional incentive to encourage retention. There was also the suggestion to give goods as part of the compensation package: ’Apart from giving them cash, you can buy some items for the baby or some home necessities like you do some shopping for the family like food that is necessary for the woman after giving birth’ . (IDI-004-MALE PARTNER).

Other suggestions from the male partners included the need to consider the distance between the study site and the participant’s home before determining transport reimbursement costs, consider that the transport costs fluctuate and therefore researchers should arrange to increase reimbursement accordingly. Men mentioned that when women stay for a long time at the clinic during the clinic visits, they need to be provided with a meal or something to eat.

The health workers reported that compensating for transport costs and time were important to encourage women to attend the frequent visits to the clinic.

Confidentiality

Women were asked what they understood about confidentiality in research. Some participants in an FGD defined confidentiality in terms of secrecy so that community members never got to know about their involvement in research.

I think confidentiality means, keeping my secret about participating so that am not despised for people to say that am like a rat they use to test drugs, because that’s how people perceive it, yet they don’t know that it’s to benefit every pregnant woman. (FGD-002- [30–35 year] - WIT).

For others, it was keeping a secret and not sharing information beyond the two people - researcher and volunteer. Others said that you could share the information without identifying the person:

The identification numbers they give to us are the ones that help us to remain confidential, that the information we give, even if it goes public, it not easy to know that this and such a person is the one who gave out the information. (IDI- 003-WIT).

A male partner said he did not care what they shared if they did not include sensitive information about family:

I don’t think confidentiality is necessary, I don’t think there is any information I want to hide, am so free even if my name is mentioned in public, especially if I know that I don’t have any crime, the only thing I mind about is protecting my family, so they can put my name anywhere, but they shouldn’t put other details like my wife’s name and children. (IDI-004-MALE PARTNER).

One of the stakeholders mentioned the importance of volunteers’ contributions to the research being included:

I agree that all the information shared by the participants should be kept confidential, what I mean is no one should be able to identify that these particular views came from the woman leader or attaching our names on views because, this means that we shall be identified, however you can just say that these views are from the leaders of Kawempe in general so that we don’t miss out on sharing our views with you. (IDI-004-STAKEHOLDER).

Involving family members in decision-making

Most women said that they accepted to join the vaccine trial after consulting their spouses before a final decision to join:

When I accepted, I went back and explained to my husband about the research, and he also advised me that it was a good thing being part because he had a friend whose wife has participated in a research study. When I agreed to join the study, I took the consent form for him to read and after he read through, he told me to continue in the study because it was good. (FGD-001-[18–24 years]-WIT).

Women reported accountability to spouses, one woman took pictures of the information document and sent them through social media (WhatsApp) for him to read before she gave consent.

Some women informed their spouse but also went on to inform their close relatives like their mother before they decided to join the vaccine trial.

The truth is I did not accept to join that very day, they taught and explained everything, I understood very well but I told the health worker that I will come back, I had to ask my husband, … I went and also told my mother about it and she said most of the medicines they make first go through such trials, even the current vaccines were tested so she gave me a go ahead (FGD-002-[30-35years]-WIT).

The fear of consequences in the marriage if a woman did not inform the spouse was highlighted by one of the women:

‘I think its important [to engage a partner] because I don’t want to create misunderstandings within the family, I want a peaceful marriage, because If anything happens to the baby, I am answerable’. (IDI-012-WIT).

One woman who was not in the trial mentioned the challenge to autonomy caused by the cultural context if a woman wanted to take part in a trial, because a husband might not grant his permission for something a woman may be very keen to do.

Our findings show that some men would seek advice elsewhere before they made a final decision about their family’s health. One spouse said,

“I told my mother, and she was not happy with my wife accepting to participate, my friend is the one who encouraged me because she told me, she was also once involved in research at Mulago when she was pregnant for her twins and the children are very healthy up-to today they are now seven years. They had to first convince me, at first l had refused.” (IDI-003-MALE PARTNER).

A stakeholder mentioned the importance of culture, but they also mentioned economic dependence of some women on men and therefore advised that men should be informed about research in which their wives will participate.

In our country setting men are the heads of the families and they are responsible for taking care of the homes, women on the other hand are home makers and most of them don’t work, they depend on their husbands for all their financial needs and men take care of them, therefore it is hard for these women to do anything without involving their husbands, it’s very important to involve these men, when doing research. (IDI-005-STAKEHOLDER).

Our findings indicate that while many women felt able to decide on participation in the trial, including seeking more information and clarifications, they were also conscious that they needed agreement from their partners. The men we consulted valued the opportunity to be given information on a trial their pregnant partner may take part in and be part of the decision-making.

The findings of our study show the importance of giving enough time to potential volunteers to reflect and contact their relatives and key stakeholders in their decision-making process. Pregnant women are a special group because they consent for themselves and for their babies. The family and community support systems need to be engaged when sharing research study information, particularly involve male partners because they are usually the heads of the households and source of livelihood for the pregnant women.

Although some women mentioned that they made their own decision to join for the clinical trial, the majority of the women joined the trial after consulting the male partners who were the fathers of the children to be born. Involving men in the information sharing process remains critical for retention during maternal vaccine clinical trials and creating an environment at the hospitals that would encourage their involvement has been suggested in other studies conducted in Uganda [ 11 , 19 ]. Most cultures in Uganda follow a patrilineal system and most households are headed by men, and this impacts on how health decisions maybe made by some women [ 20 ].

The women we spoke to were concerned about the safety of their baby and this is one reason why they valued the detailed information given to them and referred to the information documents given to them at the time of consent. Similar concerns about safety of the baby have been reported in other studies [ 11 , 21 ].

Our findings showed that less literate volunteers can understand study information if it is presented in their local or language they best comprehend. Similar findings have been reported that volunteers who may not be able to read and write, do understand information conveyed in their language or the language they understand and do not think they need a witness to confirm their consent [ 12 ].

Compensation for time and inconvenience to the participant is required but how to compensate is challenging. Providing food and transport costs are seen as beneficial for participation. A study conducted among participants in an HIV vaccine trial reported that some participants reported that they could stay at the clinic longer because of the meals they were receiving [ 22 ]. Another study that followed up phase 1 clinical trials revealed that volunteers may think that they can earn a lot from taking part in clinical trials, and take part because of that, which raises the issue of undue inducement [ 23 ]. It has also been reported that participants enrolled to join clinical trials for the health and wellbeing benefits as well as providing a way of meeting with peers [ 24 ].

In addition, research teams need to ensure study information is shared in a form appropriate for volunteers in each context to enhance comprehension of study procedures especially if the participants may not be literate.

Participants while discussing best practice to enhance comprehension, mentioned video clips, pictures, poster, and media as useful tools. Previous research has made comparisons between the standard consent document, messaging and videos showing that although there was no significant difference in the three models, the volunteers liked the visual methods which helped them retain information better [ 25 ]. Besides the digital and manual tools, peer to peer sharing was noted in our study as a possible strategy to increase comprehension and trust in the vaccine studies. Future maternal clinical trials could adopt a similar strategy to involve women who have taken part in concluded maternal vaccine trials to convey information at different phases of a trial to support the consent process. Getting men to discuss vaccine trial information for pregnant women in this context and similar contexts may reduce suspicion about the women’s participation in a trial. The stakeholders included influential leaders in the community, leaders who may influence decisions about research and healthcare workers. In this study we had only one representative from the ethics committee. In future studies it is useful to involve ethics committee members to discuss the ethics of male involvement in the decision-making path of their pregnant partners who join clinical trials.

Study limitations

The study was conducted in one hospital in the city which is not fully representative of all the pregnant women and stakeholders especially those in the rural communities. However, this is the national referral hospital for pregnant women, and we included women who did not necessarily live in the city but also lived in suburbs and nearby districts to Kampala. We also had very few stakeholders who took part to discuss their insights although we got useful pointers to community engagement.

We found that pregnant women make decisions to join a clinical trial after consulting with close family. Our findings suggest the need for an information strategy which ensures the continuous sharing of study procedures throughout the course of any clinical trial to increase comprehension. It is important that this information sharing is not only for the pregnant woman, but also her family, particularly the partners of potential participants, so that they are consulted and informed in a way that promotes understanding. Getting stakeholders and policy makers at the national level to discuss challenges that pregnant women face while making decisions to take part in clinical trials would benefit future clinical trials.

Data availability

The data that supports the findings of this study are available from the corresponding author’s institution. The data are however, available from the authors upon reasonable request.

Abbreviations

In-depth Interview

Focus Group Discussion

Women in Trial

Women Not in Trial

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The study was funded through the training department at the MRC/UVRI and LSHTM Uganda Research Unit which is jointly funded by the UK Medical Research Council (MRC) part of UK Research and Innovation (UKRI) and the UK Foreign, Commonwealth and Development Office (FCDO) under the MRC/FCDO Concordat agreement and is also part of the EDCTP2 programme supported by the European Union. The clinical trial was conducted by Makerere University John Hopkins University and is sponsored by St George’s University of London through the EDCTP2 programme supported by the European Union.

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Janet Seeley and Kirsty Le Doare contributed equally to this work.

Authors and Affiliations

Medical Research Council/Uganda Virus Research Institute & London School of Hygiene and Tropical Medicine Uganda Research Unit, Entebbe, Uganda

Agnes Ssali

Makerere University -John Hopkins University Research Collaboration, Kampala, Uganda

Rita Namugumya & Phiona Nalubega

St George’s, University of London, London, UK

Mary Kyohere & Kirsty Le Doare

London School of Hygiene and Tropical Medicine, London, UK

Janet Seeley

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Contributions

A.S conceptualised the study with support from K.L and J.S, study design, data collection, analysis, and interpretation, and wrote the manuscript. R.N and P.N conducted data collection, recruitment, data analysis, interpretation and contributed to writing. M.K. contributed to trial design, recruitment process and contributed to writing. K.L contributed to the clinical trial design, editing and critical appraisal of manuscript J.S contributed to concept, study design, editing and critical appraisal of manuscript.All authors reviewed the manuscript.

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Correspondence to Agnes Ssali .

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Participation in the qualitative study was voluntary. Potential participants were recruited from a public health facility after permission had been sought from the hospital administration. Study information was shared with each individual before they gave their consent to take part. The study was approved by the Makerere University school of medicine Research and ethics committee Mak-SOMREC-2022-331), approved by the national regulatory body-Uganda National Council for Science and Technology (SS1278ES-UNCST) and the London School and Tropical Hygiene Research and ethics committee (28257-LSHTM). The research team signed a confidentiality agreement.

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Ssali, A., Namugumya, R., Nalubega, P. et al. Exploring the consent process among pregnant and breastfeeding women taking part in a maternal vaccine clinical trial in Kampala, Uganda: a qualitative study. BMC Med Ethics 25 , 57 (2024). https://doi.org/10.1186/s12910-024-01055-7

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Unveiling a foreign body masquerading as periarticular calcification: a case report

• Amirhossein Kamalinia 1 ,
• Asal Seifaei 2 ,
• Seyed Arman Moein 1 , 3 &
• Hamid Namazi 1  

Journal of Medical Case Reports volume  18 , Article number:  251 ( 2024 ) Cite this article

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Introduction

Evaluating isolated extremity discomfort can be challenging when initial imaging and exams provide limited information. Though subtle patient history hints often underlie occult pathologies, benign symptoms are frequently miscategorized as idiopathic.

Case presentation

We present a case of retained glass obscuring as acute calcific periarthritis on imaging. A 48-year-old White male with vague fifth metacarpophalangeal joint pain had unrevealing exams, but radiographs showed periarticular calcification concerning inflammation. Surgical exploration unexpectedly revealed an encapsulated glass fragment eroding bone. Further history uncovered a forgotten glass laceration decade prior. The foreign body was removed, resolving symptoms.

This case reveals two imperative diagnostic principles for nonspecific extremity pain: (1) advanced imaging lacks specificity to differentiate inflammatory arthropathies from alternate intra-articular processes such as foreign bodies, and (2) obscure patient history questions unearth causal subtleties that direct accurate diagnosis. Though initial scans suggested acute calcific periarthritis, exhaustive revisiting of the patient’s subtle decade-old glass cut proved pivotal in illuminating the underlying driver of symptoms.

Our findings underscore the critical limitations of imaging and the vital role that meticulous history-taking plays in clarifying ambiguous chronic limb presentations. They spotlight the imperative of probing even distant trauma when symptoms seem disconnected from causative events. This case reinforces the comprehensive evaluation of all subtle patient clues as key in illuminating elusive extremity pain etiologies.

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Acute calcific periarthritis is an inflammatory condition characterized by calcium hydroxyapatite deposition within periarticular soft tissues, precipitating an intense localized inflammatory response [ 1 ]. Notably, even with advanced imaging, differentiating acute calcium deposition diseases from mimickers poses a diagnostic challenge in atypical presentations involving the hands and fingers [ 2 ].

Evaluating isolated extremity pain can be challenging when initial exams and imaging provide limited information. Categorizing nonspecific symptoms as idiopathic is often used as a catch-all diagnosis. However, subtle hints in remote patient histories often reveal pain causes [ 3 , 4 ]. Although, patients may not recall causative trauma, remote injuries can cause foreign body retention, leading to delayed inflammation and discomfort. Thus, a common mistake in assessing chronic limb pain is solely focusing on the site of pain, rather than considering the patient’s complete medical history and any underlying causes [ 5 , 6 ]. Seemingly minor details buried in a patient’s account may shed light on occult pathologies underlying their complaints. In cases of nonspecific limb discomfort, benign-appearing symptoms may signal retained foreign bodies or other occult disease processes [ 7 , 8 , 9 ].

We present a case of retained foreign glass as an unexpected finding in the workup of chronic finger pain despite intact skin and unrevealing initial studies. Sharp hand injuries with foreign bodies are commonly seen in daily orthopedic practice. This case spotlights the imperativeness of re-examining even obscure historical subtleties when evaluating diagnostically evasive extremity pain to illuminate the underlying drivers of patients’ symptoms. This experience serves as a reminder for meticulous history-taking and pre-operative evaluation in orthopedic surgeries.

A 48-year-old White male presented to our clinic with a chief complaint of vague and intermittent pain at the ulnar aspect of the fifth metacarpophalangeal (MCP) joint of the right hand. With a blood pressure of 130/80 mmHg, heart rate of 86 beats per minute, respiratory rate of 21 breaths per minute, and temperature of 37.2 °C, vital signs were normal. His past medical history was not remarkable, and he had no familial history of related diseases such as rheumatoid arthritis. He had no recollection of trauma to his hand. The patient’s physical examination revealed mild tenderness to palpation over the ulnar collateral ligament, without appreciable swelling, erythema, ecchymosis, wound, or scar. Range of motion and strength testing were within normal limits. Besides a borderline first-hour erythrocyte sedimentation rate (ESR) 22 mm/hour (normal range 0–20 mm/hour), his lab data was not remarkable. Complete blood count (CBC), C-reactive protein (CRP), urine analysis, and rheumatologic work-ups showed no abnormality. Radiographic evaluation showed a calcified lesion adjoining the ulnar collateral ligament at the fifth MCP joint, indicating possible chronic inflammation (Fig.  1 ). Initially, with a possible diagnosis of chronic calcified peroarthritis and inflammation of the ulnar collateral ligament of the fifth MCP joint, medical management was chosen. Acetaminophen tablet 500 mg three times per day and indometacin tablet 75 mg two times per day were prescribed. Yet, the patient’s symptoms did not diminish with medical therapy.

Radiographic imaging showing a calcified lesion concerning for inflammation. A Posterior-anterior view of right hand demonstrating calcification (arrow) adjoining ulnar collateral ligament of fifth metacarpophalangeal joint. B Oblique view providing additional visualization of periarticular calcification (arrow)

Given the uncertainty regarding overall diagnostic accuracy, the patient was recommended for surgical intervention for further management of the underlying pathology. During the surgical exploration, a glass foreign body encapsulated in fibrotic tissue was identified, eroding into the underlying bone of the fifth MCP joint (Fig.  2 ). Upon further history-taking postoperatively, the patient recalled sustaining an unreported glass laceration to the volar right hand nearly 10 years prior, for which he did not seek medical attention given the lack of symptoms at the time. Apparently, the injury had left no visible scar. He was discharged the same day with no problem regarding the surgery.

Discovery of glass foreign body. A Intraoperative exposure revealing an unexpected finding (not shown). B Retrieved encapsulated glass fragment eroding into bone (not pictured)

The patient had an uncomplicated postoperative course with complete symptom resolution at 6-week follow-up (Fig.  3 ). Furthermore, the patient had no complaint regarding his surgery and had no complication in his finger function at 6-month follow-up.

Postoperative imaging after glass removal. A Posterior-anterior hand radiograph showing interval removal of the calcified lesion. B Oblique perspective demonstrating postsurgical changes at the fifth metacarpophalangeal joint space after glass foreign body removal

In this article, we present a case of chronic fifth metacarpophalangeal joint pain. Though radiographs showed a calcific lesion, surgical exploration revealed an encapsulated glass foreign body, an unexpected decade-old relic the patient had forgotten until the postoperative history re-taking highlighted the vital value of comprehensively probing even obscure historical clues when evaluating vague limb pain.

A complete medical history is a vital component of patient evaluation, and yet subtleties may be overlooked without iteratively revisiting with directed questioning. Patients frequently fail to associate remote or seemingly insignificant injuries with current symptoms, diminishing perceived relevance [ 4 , 6 , 10 ].

In a similar case, a 21-year-old female with progressive foot pain had a lesion resembling a vascular malformation. Finally, during the surgery, it turned out that it was a wood splinter in her foot, and she did not recall an event of stepping on a broken broomstick [ 11 ].

However, obscurities uncovered on careful historical re-examination frequently illuminate explanatory pathology. In cases of nonspecific extremity discomfort such as this one, exhaustive recounting of past trauma, even minor lacerations healed without intervention, is imperative [ 7 , 8 ]. Focused history-taking is equally essential at postoperative follow-ups when new symptom context guides identification of relevance in previous events [ 12 ]. As this case reveals, a forgotten glass cut causing no initial issues precipitated future complications necessitating eventual surgery. The dramatic symptom resolution post-extraction demonstrates how remote subtleties direct diagnostic accuracy in perplexing presentations. This requires thorough interviewing and analysis of all potential triggering factors to achieve a comprehensive diagnosis.

Also, several inflammatory arthropathies can present similarly to foreign body retention on preliminary imaging. Foreign material may mimic hydroxyapatite deposition disease, though less common in the hand, and will demonstrate calcific focus with surrounding inflammation [ 13 , 14 ]. Meanwhile, embedded fragments can observationally overlap with gout and pseudogout frequently which manifests as erosions with sclerotic margins and soft tissue swelling [ 15 ]. Even synovial osteochondromatosis, though distinguishable by loose intra-articular bodies, causes bony projections potentially confused with external debris [ 16 ]. These considerations showcase how advanced imaging lacks the specificity to accurately diagnose intra-articular pathology in atypical presentations [ 17 ]. While sensitive for joint disease, areas of calcification or ossification cannot delineate if they result from endogenous pathophysiology versus exogenous introduction. This limitation underscores the vital value of history-taking in diagnostically clarifying ambiguous scans [ 18 , 19 ].

In conclusion, our case report enhances overall comprehension of such cases and reinforces the importance of a comprehensive approach in diagnosing and managing similar conditions. Our findings underscore the critical significance of thorough history-taking in uncovering latent musculoskeletal etiologies, emphasizing the pivotal role this aspect plays in clinical practice.

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Bone and Joint Diseases Research Center, Shiraz University of Medical Sciences, Shiraz, Iran

Amirhossein Kamalinia, Seyed Arman Moein & Hamid Namazi

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Asal Seifaei

Research Center for Non-Communicable Diseases, Jahrom University of Medical Sciences, Jahrom, Iran

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AK and AS drafted the manuscript. HN collected the data and revised the manuscript. SAM collected and reported the imaging data. HN proofread the manuscript and did the English language editing of the manuscript. HN revised the final version of the manuscript and supervised the study. All authors read and approved the final version of the manuscript.

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Correspondence to Seyed Arman Moein or Hamid Namazi .

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The present study was approved by the Medical Ethics Committee of Shiraz University of Medical Sciences. The purpose of this report was completely explained to the patient, and written inform consent was obtained from the patient.

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Kamalinia, A., Seifaei, A., Moein, S.A. et al. Unveiling a foreign body masquerading as periarticular calcification: a case report. J Med Case Reports 18 , 251 (2024). https://doi.org/10.1186/s13256-024-04475-6

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Received : 05 January 2024

Accepted : 26 February 2024

Published : 14 May 2024

DOI : https://doi.org/10.1186/s13256-024-04475-6

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• Foreign body
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