Encouraging Safe Activity for Children with a Bleeding Disorder
By: Ned Bixby, SPT
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Background
Working with children has been a passion of mine for a long time and I knew that I wanted to explore pediatric practice within physical therapy upon being accepted to UNC’s DPT program. A topic that was not addressed in great detail within the curriculum was children who have bleeding disorders. Dr. Dana McCarty, PT, DPT, PCS, C/NDT, put me in touch with Jennifer Newman, MSPT, who is the physical therapist for the Hemophilia Treatment Center at UNC. Ms. Newman and I had a meeting to discuss projects she had coming up to see if any of them would spark interest in me and once she began talking about providing an information session to teenagers with bleeding disorders, I was immediately hooked. My knowledge of bleeding disorders was very minimal and I had no idea how PTs could help, which made this project even more enticing.
Additionally, Dr. Mike Gross, PT, PhD, FAPTA, encouraged me to develop a scholarly powerpoint that could be presented in the future to students and clinicians about bleeding disorders and what a PTs role is in managing their condition.
Overview
Until recently, children with bleeding disorders (such as hemophilia and Von Willebrand Disease) were often discouraged from participating in exercise, sports, and physical activity in general due to the increased risk of sustaining an injury, and therefore a bleed.1 When these injuries occur to this population, they are less able to control the bleeding due to an interruption in their coagulation cascade.2 This can lead to increased and prolonged bleeding into a muscle or joint which can lead to deformities, loss in mobility, chronic pain, and decline in functional ability.3 Luckily, treatments have been developed to help prevent these episodes of increased and prolonged bleeding.4,5 Using prophylaxis injections of their deficient or defective factor on a regular basis improves a child’s (and an adult’s) ability to heal after sustaining an injury.4,5 Researchers are noticing that children who are not being active are developing other chronic conditions, either in childhood or earlier in adulthood, such as obesity, CVD, diabetes, cancer, hypertension, osteoporosis, and depression.1
Purpose
The primary purpose of this project is to encourage children to be active, but to be smart about what activities they choose. They should be applying the appropriate strategies to minimize their risk of sustaining a bleed so that they can reduce their risk of developing other chronic conditions.1
The second portion of this project is to pass on this information to students and clinicians to continue to encourage safe participation in activity. Information is provided so that clinicians know who to contact if they are the first provider to see a child with a bleeding disorder so that the appropriate comprehensive multidisciplinary care can be provided.
Products
I produced 3 products from this capstone project:
The presentation for teenagers with a bleeding disorder was given at Hemophilia of North Carolina’s 45thAnnual Meeting in Winston-Salem. Being Active with a Bleeding DisorderÂ
A handout was provided to the teenagers that summarized the important take away points from the presentation. Kids handout
An introductory informative presentation is provided for PT students and currently practicing clinicians on bleeding disorders. This presentation can be delivered as an inservice for my upcoming clinical rotation or as part of a lunch and learn at a future clinic where I am working. PT for Children with Bleeding Disorders
Evaluation/Reflection
I reached out to my capstone committee for feedback for both of my presentations and received valuable responses that improved both of my products. I also created a short evaluation form for all twelve of the teenagers who attended my presentation. The general feedback was very good. They liked how I interacted with them and asked them questions so that it felt more like a discussion than a lecture. They were appreciative of the information I provided about the risk of injury levels with each sport and how I explained what risk of injury meant and that the levels were for the general population, not just people with bleeding disorders.
What my presentation lacked most was providing hands on activities and promoting more active participation. I knew I wanted this talk to be more of a discussion than a lecture, but I did not provide opportunities for movement and collaboration. I was assigned to provide my talk at 9 o’clock on a Saturday morning, which may have made it more difficult to engage with my audience because teenagers typically like to sleep in late on the weekends. I had planned to implement a short exercise program, but many of the kids arrived late and I had to postpone my start time by about 15 minutes. Due to this time constraint I was unable to administer the exercise plan.
For future talks to teenagers, I will want to not only make sure my presentation is given in a discussion style, but to also plan activities throughout my time with them that will have them up and moving around. I think it will have a greater impact on them becoming interested in the information which will then translate to them remembering the information.
Overall, I was happy with how my talk went and pleased with the amount these kids were willing to participate in the discussions. I can definitely see myself providing more informative presentations to teenagers in the future and have learned the importance of actively engaging my audience so that the experience is more enjoyable and memorable.
Acknowledgements
I would like to take the time to thank Jennifer Newman, MSPT, for the time she put into helping me learn and understand the difficulties that come with living with a bleeding disorder. Your passion for educating and improving the quality of life for these kids is what drove me to develop these products for this project. You provided such amazing feedback and it was a real pleasure having you as a mentor and an advisor. This project simply could not have been without you!
I would also like to thank Dr. Mike Gross, PT, PhD, FAPTA for helping me come up with the idea of developing a scholarly presentation for students and clinicians. This was a great addition as I was able to encompass the importance of educating those who have a bleeding disorder and those who come in contact with a patient with a bleeding disorder. The combination of these two presentations will improve the care that is provided for these kids.
Lastly, I would like to thank Dr. Dana McCarty, PT, DPT, PCS, C/NDT, for supporting me in my passion to serve children. You worked hard to help me find a project I would feel passionate about so this experience would be most enjoyable and putting me in contact with Jennifer Newman was the perfect fit.
Resources
- Lobet S, Lambert C, Hermans C. Stop only advising physical activity in adults with haemophilia… prescribe it now! The role of exercise therapy and nutrition in chronic musculoskeletal diseases. Haemophilia2016;22(6):e554-e556. doi:10.1111/hae.13073.
- National Hemophilia Foundation. What is a Bleeding Disorder? Available at: https://www.hemophilia.org/Bleeding-Disorders/What-is-a-Bleeding-Disorder. Accessed April 10, 2018.
- Kabel AM. Bleeding Disorders: Insights into Aetiology, Pathogenesis,Diagnosis and Management. International Journal of Hematological Disorders2014;1(1):22-26.
- Abshire TC, Federici AB, Alvárez MT, et al. Prophylaxis in severe forms of von Willebrand’s disease: results from the von Willebrand Disease Prophylaxis Network (VWD PN). Haemophilia2013;19(1):76-81. doi:10.1111/j.1365-2516.2012.02916.x.
- Berntorp E, de Moerloose P, Ljung RCR. The role of prophylaxis in bleeding disorders. Haemophilia2010;16 Suppl 5:189-193. doi:10.1111/j.1365-2516.2010.02319.x.
Image retrieved from:Â http://media.beam.usnews.com/d1/8a/34d7002d4a8d80a534480b6467c1/150813-kidssquat-stock.jpg
5 Responses to “Encouraging safe activity for children with a bleeding disorder”
Julie Coats
Hi Ned,
I really enjoyed learning from your powerpoint presentation and I love the brochure that you created for the children! I have never worked with children with hemophilia, so this was a great resource for me to review. I was wondering what research was being done on treatments and it sounds like a new subcutaneous injection is being fast-tracked.
https://www.hemophilia.org/Newsroom/Industry-News/HEMLIBRA-Receives-Breakthrough-Designation-from-FDA
How wonderful that this treatment may evolve from IV administration to a once weekly subcutaneous injection. It seems like that will likely improve these children’s quality of life tremendously.
If any colleagues need a resource on patients hemophilia, I would not hesitate to refer them to you. This information was presented very well and was very interesting to me, even though I have never had a patient with hemophilia.
All the best in your upcoming affiliation and career! Please do not hesitate to reach out if I can be of assistance in the future!
-Julie
Dana McCarty
Hi Ned! Fantastic work in a needed area. I was glad to hear that you got good feedback from the teenagers about your presentation. It sounds like you did a great job given time restraints and well, teenagers! I think you’re well-suited to interact with this age group and will have a lot to offer future employers and patients.
Ned Bixby
Thank you for the great comments Bria and Anthony! I really appreciate your feedback. Anthony, regarding your question, I think you are right that some of these kids had heard this message before. But, what was really beneficial was that instead of being one on one with their hematologist or PT, they were in a room surrounded with other kids with bleeding disorders. While, they present with different severities I think it was good for them to hear about what some of their peers were participating in for activity. It ranged from soccer to fishing so those who may have been more timid to try a more contact sport could talk with those who were already involved and learn what strategies they use to be safe. This may have been the first time some of them have been surrounded by other kids who have a bleeding disorder. If they did not learn anything from me, I am hopeful that I at least started the conversation so that they could learn from each other.
Anthony Augliera
Hi Ned,
Great job on your capstone project! Prior to reading and viewing your materials, I had little knowledge about bleeding disorders in the adolescent population. I think educating teenagers about the importance of safe physical activity and exercise is especially important for this population, as they may have a fear of exercising, or their families may discourage them from participating in sports because of their own concerns. I think your presentation is an empowering tool for a population that needs to be aware of the negative health impacts of a sedentary lifestyle. The information you discuss in your presentation provides teenagers with valuable knowledge regarding safe participation in physical activity, which can increase their self-confidence, and hopefully ease some of their family member’s concerns regarding exercise.
I thought you did a great job making your presentation for the teenagers age-appropriate and relatable. I can tell that you tried to incorporate some humor and relatable content into the slides in order to build rapport with your audience. I also agree that the timing of your presentation likely interfered with engagement, but I am sure you provided charisma to the presentation regardless! I wonder if this presentation would have a greater impact if it specifically targets newly diagnosed teenagers with a bleeding disorder, as they are less likely to have heard most, if not all, of this content before? If some of the teens attending the conference have been living with this diagnosis for years, they might feel like they are not learning new information, even though you are addressing important misconceptions that are worth reviewing.
Lastly, I thought it was an excellent idea to also create a scholarly presentation that guides physical therapists on the treatment of children with bleeding disorders. Considering the wide range of injuries therapists might see in an active pediatric population, I thought your descriptions of acute and chronic s/s of joint and muscle bleeds, and intervention ideas, were beneficial. Finally, as you have mentioned, the goal is safe participation in physical activity, and I thought your exercise recommendations, education pointers, and additional resources were effective tools that will allow clinicians working with this population to communicate confidently and knowledgeably. Great job on this project, Ned! You will be a great pediatric physical therapist in just a few short months!
Anthony
Bria Dunn
Ned,
I think you did a fantastic job with your capstone! I especially commend you for delivering your presentation the day after comps! I felt that your presentation content was teenager-friendly (including the memes!) and I imagine that your delivery was equally as appropriate and inclusive. You really conveyed that hematologists should be the point-person when beginning an exercise program but that physical therapists (and other professionals) can play an important role in establishing and progressing exercise programs. I thought the ranked risks of popular sports was a great way to spell things out for teenagers and that the exercise plan would’ve been a great activity had you been able to get around to it. Your brochure complemented your presentation perfectly. Finally, I thought your presentation for clinicians and students was a great intro into a topic we don’t get much of throughout the curriculum and that much of the info provided could be used for those of us who work or desire to work with adult populations too. Nice work, Ned!
Bria