By: Sam Ward
Background
As the two Neuro STEP UP scholars for the class of 2021, Bri Colello and I decided to pursue a capstone project together, in some way related to people with multiple sclerosis (MS), amyotrophic lateral sclerosis (ALS), and Parkinson’s Disease (PD). The conversations we had with Jessica Cassidy, PT, DPT, PhD, and Audrey Czejkowski, PT, DPT, NCS, MSCS, were informed by the nationwide protests occurring simultaneously related to police killings of people of color and a renewed spotlight on issues in diversity, equity, and inclusion within academia and health care.
Before we began the formal process of coming up with the research idea, we discussed various topics related to access to care, such as a project that might attempt to increase access to physical therapy (PT) among people with MS, ALS, and PD in the Chapel Hill or Triangle area. We started by doing a little background digging to see what research already existed that might support our basic idea or lead us down a more productive path. We realized that there was very little research that explored factors that promote or prevent access to PT care among people with MS, ALS, and PD.
Statement of Need
This project seeks to better understand the barriers to PT care and treatment that exist for people diagnosed with MS, ALS, and PD in North Carolina. Little research exists to demonstrate how well people with any of these diseases are able to obtain necessary rehabilitative care. By using two surveys, one for patients and one for physical therapists, this project sought to determine how people with any of these three diagnoses access PT, while identifying similarities and differences between these populations in overall ability to access care. Having a separate survey for physical therapists enabled us to obtain clinicians’ perspectives on what barriers their patients encounter in receiving and maintaining access to care, and what barriers they faced in providing high quality care to people with MS, ALS, and PD.
There is limited evidence exploring the topic of access to PT care in these three groups, though one previous study demonstrated significant racial disparities in neurologic health care utilization in people with MS, PD, and other neurological disorders (ALS not included).1 Likewise, a separate 2008 study demonstrated that more than 1 in 5 people with MS, cerebral palsy, and spinal cord injury did not receive needed rehabilitation care.2
By exploring potential demographic factors associated with access to PT care, this project addresses the need for a better understanding of patient care. Ultimately, this project aimed to discover and to be able to suggest more focused areas for study to help further the American Physical Therapy Association’s Strategic Plan, which includes expanding access to care and maximizing awareness of the physical therapy profession.3
Overview & Purpose
When we took a step back after performing our background research we concluded that before we could implement a project aiming to improve access to care, we first needed to understand the most relevant barriers. In order to do so we decided to create two surveys, one for people with MS, ALS, and PD, and another for physical therapists.
The purpose of the study was to understand accessibility to rehabilitation care from the patient and clinician perspective. Both surveys asked questions about general background demographics, access and barriers to PT care, and included questions regarding the impact of the pandemic on receiving or delivering care. In the patient survey, we also asked about household information, such as income, type of community where the person lives, and number of people in the home, and we asked about satisfaction with current or past PT care. On the clinician side we asked questions related to the person’s experience working with people with MS, ALS, and PD, specific training for working with that population, and experience in the clinic more generally.
Products
Patient Survey for people with MS, ALS, and PD
Clinician Survey for physical therapists
Capstone PowerPoint Presentation
Results & Discussion
We found that the greatest barriers to accessing physical therapy care were due to or related to transportation, financial considerations, geographic location and distance between home and clinic, and the overall time it takes to obtain care. Upon further analysis we also saw that even those people who reported higher levels of annual income and levels of education reported similar barriers to accessing PT care as those with fewer financial resources or lower levels of education. From a clinical standpoint, I think this is a crucial result to recognize.
It is incumbent on us as providers to figure out how best we can remove or lower the barriers patients face in accessing care regardless of diagnosis or socioeconomic status.
If the respondents who reported the highest levels of household income reported transportation, finances, and time as significant barriers to care, then it is reasonable to suppose that these same barriers are felt to an even greater degree by those with lower levels of income or with greater disease burden.
In reflecting on the project, there were likely some manageable barriers that prevented the study from reaching a broader and more diverse population. We relied mostly on online and anonymous flyer recruitment, engaged in limited face-to-face and individual recruitment, and did not complete much outreach beyond the relatively affluent Triangle are. Also, in terms of differences between groups, we had more initial success letting people with MS and PD come to us and ended up doing more face-to-face recruitment to garner responses from people with ALS. People with MS and PD were reached more through support groups and pre-existing relationships, whereas responses from those with ALS were gathered directly at the UNC multidisciplinary clinic, which may account for the increased diversity we saw in participants with ALS compared to those with MS and PD.
For more details about the study results feel free to take a look at the presentation I created or watch the recording of the presentation.
What questions remain?
To summarize briefly, we originally set out to reach a diverse group of individuals with neurodegenerative diseases in order to ask about and, hopefully, draw conclusions on their ability to access PT care. Maybe not so surprisingly the responses lack the diversity we wished to capture. We relied heavily on potential participants to respond to us without spending as much time actively recruiting across a diverse array of settings. So, some questions remain that we would be well-served to ask, even if the answers are not readily or easily available, in order to understand the past, undertake new research, or move forward with our own findings.
- Why and for what reasons did we not receive responses from a more racially, ethnically, educationally, or financially diverse pool of participants?
- Does the diversity of the respondents accurately reflect the diversity of the people reached who may or may not have completed the survey?
- Was there skepticism of this questionnaire that limited participation?
- Does the diversity of physical therapists affect the diversity of the patient population in general?
- For those who discontinued care due to the pandemic, was teletherapy an option that could have prevented a disruption in care?
Health Literacy
Though the audience members were physical therapists or DPT students with a high level of competence about physical therapy in general, my presentation topic was likely a newer one for them, filling the role of early exposure to the subject matter.4 The presentation included language and written materials that were appropriate for this audience, with the goal of being concise, clear, and comprehensive. The products are specific to physical therapy, but were created to be comprehensible to students and clinicians in other health care fields.
Evaluation
Throughout the project, we received feedback and advice from our Capstone advisor (Jessica Cassidy, PT, DPT, PhD) and committee members (Audrey Czejkowski, PT, DPT, NCS, MSCS, and CJ Hamilton, PT, DPT, MSCS). This informal and constructive feedback helped to inform the directions we took when seeking survey responses and helped in our analysis of the results.
After giving my presentation I distributed a brief online Qualtrics survey to all audience members and requested that they provide feedback, asking questions regarding the presentation’s clarity in providing relevant survey information and effectiveness at providing clinically meaningful information among other things.
Capstone Presentation Feedback
Acknowledgements
Thank you to Jessica Cassidy, Audrey Czejkowski, and CJ Hamilton for serving as our advisors and providing extraordinary feedback during the entire, nearly year-long process.
Thank you to Angela Rosenberg, PT, DrPH, and Marty Rosenberg for your generous support of the MS and now Neuro STEP UP program.
Thank you to Debbie Thorpe, PT, PhD, who provided insightful feedback to our project proposal.
Thank you also, to everyone who is a part of the Neuro STEP UP volunteer leadership team, for your dedication to the development and continuation of the scholarship program.
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References
- Saadi A, Himmelstein DU, Woolhandler S, Mejia NI. Racial disparities in neurologic health care access and utilization in the United States. Neurology. 2017;88(24):2268-2275. doi:10.1212/WNL.0000000000004025
- Elrod CS, DeJong G. Determinants of utilization of physical rehabilitation services for persons with chronic and disabling conditions: an exploratory study. Arch Phys Med Rehabil. 2008;89(1):114-120. doi:10.1016/j.apmr.2007.08.122
- APTA Strategic Plan | APTA. https://www.apta.org/apta-and-you/leadership-and-governance/vision-mission-and-strategic-plan/strategic-plan. Accessed January 4, 2021.
- Plack M, Driscoll M. Teaching and Learning in Physical Therapy: From Classroom to Clinic. Thorofare, NJ: Slack; 2011.
12 Responses to “Understanding Barriers to Rehabilitative Care in Neurodegenerative Diagnostic Groups”
Audrey Czejkowski
Sam,
Congratulations and great job with this capstone project! You and Bri worked very well together and have completed so much this past year. It’s amazing to reflect back on the beginning meetings for this capstone and now to review all of these impressive “final products”. I really enjoyed your presentation to our VLT team. You have clearly put in so much work into this and have set a great foundation for others. Thank you for your contributions and congratulations, again! Best of luck on your final clinical rotations and earning your DPT!
-Audrey
swward
Hi Audrey,
I really appreciate your thoughts and response. It was great to work with you and Jessica throughout the process to come up and go through with this project. It was a large undertaking, but went smoothly with both of your help.
Sam
Debbie Thorpe
Sam and Brianna
You both really did a fantastic job on this project, from developing survey questions, to data collection, analysis, and synthesis to the presentation of your results. Then multiple, professionally created, informative, evidence-based voice threads were well done and included great information! I think all of the voice threads (with your permission) could be used within the UNC DPT curriculum in different courses. I know Dr. McCarty who will be taking over PHYT 750 for me would love to have access to the Implicit Bias voice thread that Brianna developed to supplement the discussion of implicit bias in that first DPT semester! You both really did go “the extra mile” in formulating thoughts for “Future Directions”. An outstanding project all around!
Good luck with your remaining clinical rotations. You both are great representatives of the Neuro Step Up program at UNC !
Best
Debbie
swward
Hi Debbie,
Thank you so much for your feedback. Your help along the way was instrumental and very valuable. For my part I would be happy to share the work we’ve done with faculty who are interested in utilizing it in their courses.
Sam
Kyle Wolfe
Sam,
I was really impressed with this project and think you and Bri investigated a very important topic. I think you both should be very proud of the projects you were able to produce. I think this is very interesting, as my current rotation is that the patients that return yearly for maintenance therapy and tend to be doing better are of higher socioeconomic status, have close family that can consistently drive them, or have insurance that will cover it each year. I can also think of a few patients with Medicaid or who are uninsured who really struggle to get consistent care until they are well into a period of relapse, which is very unfortunate. I think that this topic brings up a lot of factors to consider.
One question I had while looking at the results of your project and clinical survey for PTs is: was their any consideration of looking into what type of insurance different clinics accept? As in, do they accept uninsured patients or patients with Medicaid, and, if so, what type of payment do these patients have? Since many of the neuro-specialized therapists or clinics I have encountered are associated with major health systems (i.e. UNC, Duke, WakeMed, Atrium, etc.), are they better equipped to offer sliding payment structures or pro-bono care to patients who need it? And, if so, are these clinics doing enough in that department to reduce that barrier to access?
I think this project highlights a very important issue, especially in a population that would best be served with consistent health care and could really suffer due to barriers. Hopefully this helps lead discussions that can reduce some of the barriers. Again, I think this was a great project and your presentation was very well done as well!
Kyle
swward
Hi Kyle,
Great questions and thank you for commenting! We did not survey any clinics themselves, but that would be a logical next step in figuring out more facilitators and barriers to care. While we asked patients about their insurance, we did not explore that from the provider or clinic side. Like you mentioned, UNC (and other large institutions) does have a financial assistance program that can help to lower the financial burden substantially for people with low incomes. It does not make getting to and from the clinic any easier, though, if the patient does not have access to transportation in the first place or has poor social support, for instance. Access to care is a multifaceted and highly complex issue, so the thoughts you offer are really important to think about. Thank you!
Sarah Richardson
Sam,
I thoroughly enjoyed reading through your capstone website and watching your presentation. In terms of the specific surveys created for community members with MS, ALS, or PD, I appreciated how you included a question regarding the impact of COVID-19 on access to quality care. Additionally, I thought the question regarding how COVID-19 has impacted the diversity of patients in the survey to physical therapists was extremely thoughtful and important to include. It’s interesting that you noted that potentially telehealth could have been utilized. I can also imagine that the COVID-19 pandemic likely influenced your recruiting efforts and the likelihood of people to respond.
You mentioned some further questions that your capstone sparked and I wanted to comment on the question regarding teletherapy. I do believe teletherapy can be a helpful tool in order to delay lapses in care especially for providers who are working in clinics with long waitlists or booked out schedules. However, I also wonder what access to teletherapy looks like? For instance, if several diverse patient populations were missed in your capstone survey due to barriers related to an online format I can only imagine setting up a teletherapy visit would face similar challenges. I fear that a teletherapy approach would further strengthen the disparities that diverse patient populations currently experience and only be a viable solution for more affluent patient populations.
Overall, I think you and Bri did an amazing capstone and I hope you feel proud of the work you were able to accomplish. I also hope this work is continued by future MS scholars!
swward
Hi Sarah,
Thank you for your response and thoughts and feedback on this project. I completely agree that there is some reason to suppose that teletherapy, while attempting to reach a greater number of people, could widen the the access gap in terms of socioeconomic factors. In that vein it makes sense to see teletherapy as an adjunct to in person care and an option for those with limited transportation resources, but not as a substitute or a proxy for increased access to care. Definitely an idea worth exploring in more detail.
Amy Thomas
First, I love the fact that you (Sam and Bri) collaborated on this impressive project. You did a great job outlining your project background, purpose, and barriers experienced by individuals and PTs that spurred its creation. In addition, the overall visual nature of the products was consistent which was appreciated as links were accessed. I do feel this Capstone is better considered a ‘project’ versus a ‘study’ as it was referred to at times but this may just be my preference of semantics. I found myself wondering to which ‘current study’ was being referred to a few times (i.e., those on your reference list or the analysis of survey results and participant feedback). As an aside, I wold have enjoyed having the speakers who appeared in the Zoom discussion introduced.
I did have a little trouble, at times, understanding that you both actually created the two surveys, as only the primary investigator was identified at the top of each one; I went back through parts of the Power Point presentation to make sure I understood the creation of the surveys was a combined effort.
One other source of confusion that gave me pause was to see conditions listed, along with MS, (e.g., PD and ALS), as neurodegenerative diseases. For example, CP was listed; this is a neurological disorder but is not characterized by progressive, degenerative processes, as it seemed was being inferred. I was struck by the the fact that studies going back to the early to mid-2000’s lump many ‘disabling conditions’ together that have a neurological basis. This speaks to the difficulties involved in teasing out impacts that distinct diagnoses may have on understanding what prevents or facilitates health care access, health care disparities, and/or rehabilitative efforts.
Overall, Sam and Bri, you did a FANTASTIC job of pulling this project together and shedding light on the multiple issues that may be explored in more depth as a result of your setting the groundwork. Thank you for providing a framework for future students and licensed PTs alike to build upon! This was a HUGE undertaking and I hope you are both proud of the professional results.
swward
Hi Amy,
Thank you for your thoughtful reply and the constructive criticism. I can understand that some confusion may have occurred with the use of the words “study” and “project.” I would agree that the culminating products would constitute a project, but a large portion of the project consisted of our IRB-approved study, which is where both those words come into play. I will certainly comb through and see where I may be able to better delineate between the two for better clarity. I plan to also see if there is a better way for me to describe the process by which we created the surveys so that it is clear how Bri and I were involved. I also fully agree that many of the conditions included in the studies we included in our evidence table are not neurodegenerative (e.g. cerebral palsy, spinal cord injury, etc.), and it is unfortunate to think that I may have mislabeled some of those diagnoses when talking about them. If you are able to be more specific about where CP is misidentified as a neurodegenerative disease I would greatly appreciate the opportunity to correct that mistake. I do agree that many of the studies we found did themselves a disservice by lumping together disparate neurological diagnoses; unfortunately there is a relative paucity of evidence on this topic and related ones.
Thank you again for your helpful response and kind words,
Sam
Jessica Cassidy
Sam,
Thank you for a thorough and organized Capstone description. As we discussed, this work establishes a solid foundation that, hopefully, the next few Neuro STEP UP cohorts can expand on. I greatly appreciated your perseverance throughout this project especially with the questionnaire construction using Qualtrics and the retrieval of questionnaires from clinic sites. Your recent presentation to the VLT members provided additional evidence of your commitment and passion for health equity. Thank you for your hard work this past year and openness to feedback from me, Audrey, and CJ.
swward
Thank you Jessica, I truly appreciate all the time you spent with Bri and me on Zoom over the past year as we formulated and analyzed the results of our study, and created all our final products. I am proud of the work we did and do hope that it can serve as a foundation for something larger and with greater weight.
Sam