Objective: To determine the risk, predictors, and prognosis of independence loss and institutionalization in patients with early Parkinson disease (PD).
Methods: We conducted a prospective population-based 5-year longitudinal study following 189 patients with incident PD and 174 controls matched for age, sex, and comorbidity. Health care status was assessed repeatedly with standardized interviews.
Results: More newly diagnosed patients with PD (15.9%) than controls (5.7%) were dependent in activities of daily living at baseline (relative risk [RR] 2.8, p = 0.004). During follow-up, 40.9% of the initially independent patients lost their independence vs 9.1% of controls (RR 4.5, p < 0.001). Higher age, shorter symptom duration, increasing motor severity, and presence of mild cognitive impairment at PD diagnosis independently predicted independence loss during follow-up. Dependency was irreversible in most (>95%) patients. Long-term care facility placement was needed in 8.8% of patients vs 0.6% of controls (RR 15.4, p = 0.001). More patients with PD admitted to long-term care facilities were fallers (RR 4.8, p < 0.001), had hallucinations (RR 4.4, p = 0.001), or had dementia (RR 4.2, p < 0.001) than home-dwelling patients. Once admitted to a long-term care facility, the age-adjusted RR for death during the study period was 5.5 (p = 0.002) vs patients never admitted and 25.1 (p < 0.001) vs controls.
Conclusions: Patients with early PD face a substantially greater risk of independence loss and institutionalization than well-matched controls. Independence loss is irreversible in most patients and represents a sinister prognostic factor in early PD. These findings have implications for patient management and health care planning.
© 2016 American Academy of Neurology.