PND86 THE BURDEN OF INCREMENTAL “OFF” HOURS ON CAREGIVERS OF PATIENTS WITH PARKINSON’S DISEASE: A NEUROLOGIST⁄PATIENT⁄CAREGIVER REAL-WORLD ASSESSMENT IN THE US

Abstract

Patients with Parkinson’s disease (PD) treated with levodopa often develop “OFF” episodes, which are characterized by the reappearance or worsening of motor and/or non-motor symptoms. “OFF” episodes may lead to a patient’s loss of independence in basic day-to-day functioning and the need for increased caregiver aid. This study aimed to understand the association between “OFF” hours and caregiver burden. We analyzed data collected between 2017-2019 from the Adelphi Parkinson’s Disease Specific Programme, a cross-sectional, observational US study of neurologists, their consulting patients with PD, and the patients’ caregivers. “OFF” hours were physician-reported, and caregiver burden was self-reported using the 22-item Zarit Burden Interview (ZBI; range score, 0-88). Eligible patients were those who were prescribed levodopa at the time of data capture, and whose respective caregivers had voluntarily completed a caregiver self-completion form. Multiple linear regression analysis was used to determine the association between the number of daily “OFF” hours (compared continuously from zero upwards) and caregiver burden. Regressions were adjusted for patient age, sex, body mass index, comorbidities, and current disease severity as determined by the Hoehn and Yahr scale. Data were available for 235 patients who had a physician-completed patient record form and corresponding caregiver self-completion form. Patients experienced a mean (standard deviation) daily “OFF” time of 1.67 (1.85) hours. Increased daily “OFF” hours were significantly associated with increased caregiver burden for the overall ZBI score (+1.62; P=0.001) and several of its domains: personal strain (+0.91; P=0.003), role strain (+0.98; P<0.001), relationship burden (+0.42; P=0.003), emotional well-being (+0.53; P=0.001), finances (+0.13; P=0.002), and loss of control over one’s life (+0.27; P=0.014). Increased “OFF” hours among patients with PD were associated with an increased degree of burden for their caregivers, as measured by the ZBI, highlighting the importance of optimal clinical management of “OFF” episodes.