Patient-centered Care for Individuals with Multiple Sclerosis: Identifying and Incorporating Patient Perspectives into Practice

MS is an immune-mediated neurodegenerative disease of the central nervous system, characterized by inflammation and demyelination². The disease course and symptom presentation are highly variable among persons with MS, with the combination of common symptoms (weakness, spasticity, sensory deficits, balance deficits and fatigue) often resulting in walking difficulties and impaired quality of life^3,4. Many people with MS seek treatment in the form of medication and physical therapy for their walking difficulties.

Gait speed is a common outcome used to determine if a walking treatment has been effective in both physical therapy practice and pharmacological research. In research on the “walking drug” dalfampridine extended-release (D-ER, Ampyra®), the researchers identified a crucial disconnect between their definition of a treatment “responder” (>20% improvement in gait speed) and what their participants considered to be “clinically meaningful improvement”^5,6. Gait speed is not the sole parameter of walking-ability, and walking faster does not always translate to walking “better”. This finding, along with the brief literature review conducted on patient perspectives on treatment efficacy for gait impairments linked under products, shows the importance of additional research concerning how persons with MS define a “clinically meaningful” treatment outcome and how clinicians can best capture this outcome.

The research used to develop my capstone originates from a qualitative research project that was initiated in the fall semester of 2017 by Dr. Prue Plummer and assisted by fellow DPT student Andrea Stewart and myself, which is currently ongoing. The purpose of this research project was to engage clinicians and persons with MS to better understand how they define meaningful clinical treatments and outcomes for walking impairments experienced due to MS. Data collected from focus groups, interviews, and surveys of physical therapists and individuals living with MS was thematically analyzed and matrices were developed to highlight key themes from both stakeholder groups. I have provided links to the focus group question route, the interview question route, the online survey adapted from the question routes and the matrix of key findings for individuals with MS under products. If you wish to learn more about the findings regarding physical therapist perspectives, I encourage you to explore Andrea’s capstone website.

The purpose of my capstone project is to provide understanding on what persons with MS perceive to be effective walking treatment and to identify ways in which physical therapists and physical therapy students can take these perspectives into consideration when selecting and assessing walking treatments to better uphold patient-centered care. I created a presentation of these findings for first year Doctor of Physical Therapy students to best instill and emphasize the importance of patient perspectives in EBP and patient-centered care prior to their first clinical rotation.

While timing hindered my ability to present and receive feedback on my presentation from my intended audience, I was able to take input from my capstone advisor and capstone committee members to not only improve my final products but to ensure my capstone message was reaching an audience where it would have the greatest impact. They were instrumental in the evolution that had to take place mid-development, from a product for clinicians to a product for students. I still plan on presenting to the first-year students and have created an evaluation form for attendees to fill out to further improve my product for future use.

Developing this capstone project was an incredibly challenging and rewarding experience. Having no prior experience with research, I am extremely grateful for the opportunity to conduct a qualitative study on a topic I feel passionately about. While participant recruitment was a much more difficult process than expected, it pushed us to get more creative with our outreach and develop an online survey as a way to reach more people. I have a greater understanding and appreciation for all the groundwork that must be done prior to the first focus group, and the rigorous process that is the thematic analysis of data in this type of research. I am now aware of the intangibles in qualitative research that I wasn’t before; the finesse it takes to effectively guide discussion and the importance of capturing what is “not said” by noting body language throughout data collection. This experience definitely pushed me out of my comfort zone, and I have learned the value of flexibility, problem solving and collaboration in research and product development. The lens through which I now analyze research and approach therapy has been recalibrated to always identify if patients perceive the treatment to be effective; either via patient-reported outcomes or directed questioning. This project has reignited my passion for physical therapy by reminding why I chose to enter this field, to effectively and positively impact the quality of a person’s life.

Overall, I am pleased with my capstone project and I am thrilled that it will serve as a reminder to physical therapy students (and all who read it) that we need to identify what is important to our patients and incorporate that into our practice for it to truly be effective.

This capstone project would literally and figuratively not have been possible without the guidance and support of Dr. Prue Plummer, PhD, PT who served as my mentor, advisor and the principle investigator for the research project on which this project is based. By generously sharing her knowledge, expertise, and time, she allowed me the opportunity to grow as a researcher and develop into a truly critically-thinking clinician, for which I am immensely grateful.

I am grateful for my classmate, Andrea Stewart, who also assisted with Dr. Plummer’s research project. This experience would not have been as rewarding without her contributions and input.
Special thanks to my committee members, Diane Meyer, PT, MSCS and Catherine Hamilton, PT, DPT, MSCS, for their commitment, feedback and support throughout this process. Their insight was invaluable in the formation of the final products for this project.

I would like to thank the Greater Carolinas Chapter of the National Multiple Sclerosis Society, the MS STEP UP program, and the program’s Volunteer Leadership Team for the impact they have had on my journey to this point. The learning opportunities this program has created and the continued support of all involved has inspired me to continue striving to be an expert in treating individuals with MS, an educational resource for healthcare professionals, and an advocate.

1. Overview – Introduction to Evidence-Based Practice – LibGuides at Duke University Medical Center. Available at: http://guides.mclibrary.duke.edu/c.php?g=158201&p=1036021. Accessed April 15, 2018.
2. Lee Mortensen G, Rasmussen PV. The impact of quality of life on treatment preferences in multiple sclerosis patients. Patient preference and adherence. 2017;11:1789-1796. doi:10.2147/PPA.S142373.
3. MS Symptoms. National Multiple Sclerosis Society website https://www.nationalmssociety.org/Symptoms-Diagnosis/MS-Symptoms. Accessed April 18, 2018.
4. Larocca NG. Impact of walking impairment in multiple sclerosis: perspectives of patients and care partners. Patient 2011;4(3):189-201. doi:10.2165/11591150-000000000-00000.
5. Goodman AD, Brown TR, Edwards KR, et al. A phase 3 trial of extended release oral dalfampridine in multiple sclerosis. Ann. Neurol. 2010;68(4):494-502. doi:10.1002/ana.22240.
6. Goodman AD, Brown TR, Krupp LB, et al. Sustained-release oral fampridine in multiple sclerosis: a randomised, double-blind, controlled trial. The Lancet 2009;373(9665):732-738. doi:10.1016/S0140-6736(09)60442-6.