Objective: Parkinson Disease (PD) progression is frequently associated with development of psychosis (P), leading to significant morbidity, caregiver distress, and other consequences. Although PDP often leads to long-term institutionalization, termed custodial care (CC), little is known about patterns of CC use in PDP patients.

Background: The complexities of determining placement in long term care facilities from billing claims using large administrative datasets means that comparatively little work has been performed in this area. For chronic degenerative diseases that often result in CC, a well-developed approach designed to identify CC would generate novel findings in this understudied area. This would permit quantification of the CC burden of patients with PDP and formation of initial inferences about the factors associated with institutionalization, helping to fill an important knowledge gap.

Methods: A retrospective cohort analysis using Medicare Parts A, B, and D data from 2007-15 was performed. PD was defined by two or more ICD-9 codes of 332.0x at least 30, but no more than 365, days apart. Patients with neurodegenerative and psychiatric disorder of other etiologies were excluded, as were patients with a history of CC institutionalization or use of baseline antipsychotic medications. PDP was determined by two or more codes for psychosis, delusions, or hallucinations; the date of the first code was established as the index date. The outcome, CC use, was defined, as per the Medicare definition, as nursing home stays of >100 consecutive days. Characteristics of patients who did and did not require CC were compared and time to CC analyzed, using the Kaplan-Meier estimator.

Results: Of 2176 patients with incident PDP, 494 (22.7%) required CC. Compared with PDP patients who did not require CC, CC users were older (83.2 vs 79.0 yrs), more likely to be female (66.6% vs 48.6%) and of white, as opposed to black or other, race (94.7% vs 90.9%). Overall, mean (median) follow-up duration was 823 (657) days: 987 (863) days for those who required CC and 775 (607) for those who did not. Of those who required CC, mean (median) number of CC stays was 1.3 (1.1). Mean (median) time to first CC stay in patients who required it was 351 (164) days; mean (median) duration of total CC stays was 502 (351) days; 48.6% of CC stays were ≥1 year. Overall, rate of first CC stay was 12.2 (95% confidence interval, 11.1-13.3) events per 100 patient-years. Within 2 and 5 years of PDP diagnosis, 22.2% and 35.7% of patients, respectively, required CC.

Conclusions: Within 2 years of PDP diagnosis, roughly a quarter of PDP patients will require CC. Once receiving CC, few PDP patients are ever deinstitutionalized, with nearly half spending a year or more in CC.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/patterns-of-long-term-custodial-care-in-parkinson-disease-psychosis/