Objective: We sought to identify whether those with advanced Parkinson’s disease (PD) who become homebound are sociodemographically different than those who continue to attend outpatient clinics.

Background: As PD progresses, symptoms increase in number and severity and patients become homebound—10-20,000 US patients of over 1 million with PD.^1-5Our knowledge of the natural course of advanced PD is based on those attending outpatient visits. The most disabled become estranged from care and research.⁶Pilot work suggests interdisciplinary home visits are feasible in reaching homebound patients and may reach a more diverse population than clinic-based studies.^7,8We launched a larger, ongoing trial of interdisciplinary home visits (HV) to extend continuity of care to homebound individuals with advanced PD. Here, we identify sociodemographic differences between HV participants vs. matched controls drawn from the Parkinson’s Foundation Parkinson Outcomes Project (POP)—the largest longitudinal PD registry comprising over 13,000 participants.

Method: Cross-sectional analysis of baseline characteristics of HV participants vs. matched POP controls. HV participants were recruited from a single non-POP Center of Excellence and met Medicare homebound criteria. Each HV participant was matched with US-dwelling POP patients by gender, age ±2 years, and HY stage. Population differences were assessed with t-tests, Wilcoxon rank sum tests or chi-square tests.

Results: Among 65 HV participants, 17 (26%) had 0 matches and 12 (18%) had 1 match in the POP; the remaining 36 HV participants had 2-5 matches. Compared with matched controls (n=164), HV participants are older (mean age 78.9y (SD 7.6) vs. 74.8y (SD 7.1), p<.01) and more diverse (25.0% non-Caucasian vs. 4.3% non-Caucasian in POP, p<.01).

Conclusion: The most advanced PD patients are underrepresented in a large cohort drawn from outpatient clinics, yet amenable to research participation in the context of a patient-centered, care-focused intervention. Notably, underserved minority patients were comparatively overrepresented in the homebound population compared with outpatient-matched controls. Novel models of care and research may help overcome challenges with access to care and underrepresentation in research.

References: [1] Pringsheim T, Jette N, Frolkis A, Steeves TD. The prevalence of Parkinson’s disease: A systematic review and meta-analysis. Movement disorders : official journal of the Movement Disorder Society. 2014. [2] Strickland D, Bertoni JM. Parkinson’s prevalence estimated by a state registry. Movement disorders : official journal of the Movement Disorder Society. 2004;19(3):318-323. [3] Ornstein KA, Leff B, Covinsky KE, et al. Epidemiology of the Homebound Population in the United States. JAMA internal medicine. Jul 2015;175(7):1180-1186. [4] Lapane KL, Fernandez HH, Friedman JH. Prevalence, clinical characteristics, and pharmacologic treatment of Parkinson’s disease in residents in long-term care facilities. SAGE Study Group.Pharmacotherapy. Nov 1999;19(11):1321-1327. [5] Weerkamp NJ, Tissingh G, Poels PJ, et al. Parkinson disease in long term care facilities: a review of the literature. Journal of the American Medical Directors Association. Feb 2014;15(2):90-94. [6] Boersma I, Jones J, Carter J, et al. Parkinson disease patients’ perspectives on palliative care needs: What are they telling us? Neurology. Clinical practice. Jun 2016;6(3):209-219. [7] Fleisher J, Barbosa W, Sweeney MM, et al. Interdisciplinary Home Visits for Individuals with Advanced Parkinson’s Disease and Related Disorders. Journal of the American Geriatrics Society. 2018;66(6):1226-1232. doi:10.1111/jgs.15337 [8] Nwabuobi L, Barbosa W, Sweeney M, et al. Sex-related differences in homebound advanced Parkinson’s disease patients. Clin Interv Aging. 2019;14:1371-1377. doi:10.2147/CIA.S203690

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MDS Abstracts - https://www.mdsabstracts.org/abstract/disparities-in-access-to-care-and-research-participation-among-individuals-with-advanced-parkinsons-disease-comparison-of-participants-in-a-home-visit-model-vs-national-registry/