Objective: The aim of our study was to examine experiences with rehabilitation services by people with Parkinson’s disease (PD) and their care partners (CP).

Background: Rehabilitation therapies can improve PD-related symptoms and quality of life. Despite these benefits, utilization of physical therapy (PT), occupational therapy (OT), and speech language therapy (SLT) varies across settings, populations, and countries with rates between 30-60% (1). Of U.S. Medicare beneficiaries with PD, only ~14% had claims for outpatient rehabilitation services, with lower rates in under-represented minorities (2). In order to understand utilization patterns, it is important to identify people’s knowledge about and perceptions of rehabilitation in PD.

Method: We developed a survey with input from a stakeholder advisory group and focus groups of people with PD and CPs; items included demographics and Likert-scale questions about rehabilitation care and its barriers and facilitators. The survey was administered online via Qualtrics (11/22-3/23) to adults in the U.S. who were people with PD or CPs of those with PD.

Results: The survey was completed by 355 respondents including 80.8% with PD, 16.59% CPs, and 2.3% as combined PD and CPs. 85.1% of those with PD and 80.1% of CPs were older than 61 years, with females represented in 48.8% (PD) and 78.3% (CPs). The cohort was predominantly Caucasian (88.8% PD, 90% CP) with 3.7% Black PD and 6.7% Black CPs. Duration of PD was less than 7 years in 68.4% (PD) and for 52.5% of the CPs. Rehabilitation care was rated as “essential” by 51.2% of PD and 68.3% of the CPs. The majority of respondents had received rehabilitation care (76.9% PD, 85% CPs), though only 23.2% PD and 28.6% of CPs reported that a healthcare provider had asked them about rehabilitation services. Interest in PT was rated as “very interested” by 46.4% of PD and 85.7% CPs, in OT by 25.5% of PD and 50% CPs, and in SLT by 22.6% of PD and 33.3% CPs. Knowledge of rehabilitation care before diagnosis was reported as “mostly unaware/uninformed” in 51.6% of PD and 46.4% CPs but increased to “very knowledgeable/aware” after diagnosis in 44.6% of PD and 53.6% CPs.

Conclusion: Interest in rehabilitation care is apparent in both people with PD and CPs, though to greater degrees in PT services compared to other OT and SLT. Increased dialogue among people with PD, CPs, and healthcare providers regarding rehabilitation care options and their timing is needed.

References: 1. Roberts AC, Rafferty MR, Wu SS, Miao G, Cubillos F, Simuni T; Parkinson’s Foundation Quality Improvement Initiative Investigators Steering Committee Members; PF QII Principal Investigators. Patterns and predictors of referrals to allied health services for individuals with Parkinson’s disease: A Parkinson’s foundation (PF) QII study. Parkinsonism Relat Disord. 2021 Feb;83:115-122. doi: 10.1016/j.parkreldis.2020.11.024. Epub 2020 Dec 4. PMID: 33339716.

2. Fullard ME, Thibault DP, Hill A, Fox J, Bhatti DE, Burack MA, Dahodwala N, Haberfeld E, Kern DS, Klepitskava OS, Urrea-Mendoza E, Myers P, Nutt J, Rafferty MR, Schwalb JM, Shulman LM, Willis AW; Parkinson Study Group Healthcare Outcomes and Disparities Working Group. Utilization of rehabilitation therapy services in Parkinson disease in the United States. Neurology. 2017 Sep 12;89(11):1162-1169. doi: 10.1212/WNL.0000000000004355. Epub 2017 Aug 23. PMID: 28835397; PMCID: PMC5595277.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/understanding-rehabilitation-care-utilization-in-parkinsons-disease/