Understanding and Addressing Barriers to Rehabilitative Care in Neurodegenerative Diagnostic Groups
By Brianna Colello, SPT and Sam Ward, SPT
As the two Neuro STEP UP (formally, MS STEP UP) scholars for the class of 2021, Sam Ward and I chose to pursue a capstone project together that incorporated the neurodegenerative diseases of multiple sclerosis (MS), Parkinson’s Disease (PD), and amyotrophic lateral sclerosis (ALS). We were further influenced and informed by the nationwide protests that spotlighted the issues of diversity, equity, inclusion, and disparities within academia and health care.
Prior to choosing our research question, we explored various topics related to access to care and health care disparities. Our preliminary research came up short, with very scarce literature exploring factors related to accessing physical therapy rehabilitation among individuals with MS, PD, and ALD. We therefore decided on our research question of: “In the United States, do people with multiple sclerosis, Parkinson’s disease, and/or amyotrophic lateral sclerosis, experience differences in access to physical therapy rehabilitation care due to specific demographic characteristics?”
Statement of Need
This project seeks to better understand the barriers to PT care and treatment that exist for people diagnosed with MS, PD, and ALS in North Carolina in order to minimize these barriers and improve patient care. We created two surveys, one for individuals with neurodegenerative diseases and one for PT clinicians, we sought to determine how these individuals access PT and the barriers they face. Additionally, we collected demographic data in attempt to identify similarities and differences between these populations in relation to accessing care. We included a clinician survey in hopes to obtain another perspective 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, PD, and ALS.
Though there is limited evidence regarding access to PT care in these neurodegenerative disease populations, we identified a few studies that found 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 identify more focused areas for study to help address barriers to car and improve patient outcomes.
Overview and Purpose
In order to execute a project aimed at improving access to care, we first needed to identify the most pertinent barriers. Therefore, we decided to create two surveys, one for individuals with MS, PD, or ALS, and one for clinicians to gain a more encompassing perspective.
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 COVID-19 pandemic on ability to receive or provide care. In the patient survey, we also asked about household information, such as income, type of community where the person lives, 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.
Recording of the presentation (Sam’s portion: first 26min)
Voicethread: Addressing Barriers to Care (Bri)
Voicethread: Implicit Bias Identification and Training (Bri)
Results and Discussion
Our results showed that the greatest barriers to accessing physical therapy care were related to transportation, financial factors, geographic location and distance to the clinic, and the overall time it takes to receive care. Upon further analysis, we also found that individuals in the Triangle area reported experiencing similar barriers to accessing PT care regardless of income, resources, or education level. If the participants who the highest levels of household income reported transportation, finances, and time as significant barriers to care, then it is reasonable to presume that these same barriers are felt to an even greater degree by those with lower levels of income or with greater disease burden.
As someone who is passionate about access to care and reducing healthcare disparities, our findings reinforce the notion from a bulletin from the World Health Organization, which states: “Ensuring universal access to skilled, motivated and supported health care, especially in remote and rural communities, is a necessary condition for realizing the human right to health, a matter of social justice.”3
My portion of the project aimed to begin gathering resources and motivating clinicians to continue to change and tackle barriers to accessing appropriate health care. I provide brief resources to address the barriers our study identified as well as implicit bias in the health care setting. There is no magic key to remove the obstacles individuals face related to their health care, but, my hope is that we can begin to reduce these structural barriers and improve patient outcomes through individual awareness and change.
We originally aspired to reach a diverse group of individuals with neurodegenerative diseases in order to inquire and, hopefully, draw conclusions and correlations on their ability to access PT care. Unsurprisingly, our study lacked the diversity we wished to gather. We primarily relied on participants to respond to us without spending 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?
This project overall, has been an eye-opening experience into the complexity of multifactorial health care access. This process was highly involved, requiring significant literature review to guide us to the best research question and approach to gathering meaningful and appropriate data for successful IRB-approval.
Further research was required to gather relevant resources in attempt to minimize health care disparities and barriers to accessing care. The resources I provide is only a small portion of available information out there. My hope is that future scholars continue to collect and utilize valuable resources to improve their patients care and the overall health outcomes for the citizens of North Carolina.
Lastly, our collaboration as a team has been ongoing for two years now. It has been such a rewarding experience working on this Capstone together. We are so grateful and appreciative of each other’s support and assistance throughout all of our studies.
The educational modules and products were developed for the expected audience of DPT students and physical therapists. The modules incorporate a combination of social, financial, education and other resource-related difficulties that involve creative problem-solving. The presentations included language and written materials that were appropriate for the desired audience, with the objective of being efficient, clear, and comprehensive. While the products were focused around physical therapy, they are generalizable to other health care fields.
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 provided a short online Qualtrics survey to all attendees 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. I additionally presented my portion of the project to the Acute Care Rehab team at Moses Cone Hospital and collected paper copy feedback forms to further curate a meaningful and effective presentation.
Thank you to Jessica Cassidy, Audrey Czejkowski, and CJ Hamilton for serving as our advisors and providing extraordinary feedback during the entire, nearly 12-month 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.
And lastly, thank you to my co-scholar, Sam Ward for providing thoughtful support and encouragement throughout our time as scholars, especially during this project.
- 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
- Chen LC. Striking the right balance: health workforce retention in remote and rural areas. Bull World Health Organ. 2010;88(5):323-A. doi:10.2471/BLT.10.078477