Burden and health-related quality of life among caregivers of Brazilian Parkinson's disease patients

PurposeTo analyze the main determinants of burden and health-related quality-of-life (HRQoL) in caregivers of Brazilian Parkinson's disease (PD) patients.MethodsCaregivers answered Hospital Anxiety and Depression Scale (HADS), Zarit caregiver burden interview (ZCBI) and EQ-5D, a generic measure of HRQoL. Patients were assessed with Hoehn and Yahr (H&Y) staging; Scales for Outcomes in Parkinson's disease (SCOPA) Motor, Cognition, Psychosocial and Sleep scales; Non-Motor Symptoms Scale; HADS; Clinical Impression of Severity Index; EQ-5D and Parkinson's Psychosis Rating Scale.Results50 Caregiver-patient dyads were assessed. Caregivers were significantly younger (55.7 vs. 65.4 years), p < 0.0001. Eighty-eight per cent of caregivers were females, and 78% were spouses. The proportion of caregivers who scored ≥11 points in the HADS-anxiety or HADS-depression subscales was 12% and 14% respectively. ZCBI mean score was 20.2 (SD 12.8), and significantly worsened as severity of disease, based on H&Y, increased (H&Y 1–2: 16.4, H&Y 3–5: 24.6; p = 0.02). Caregiver's EQ-5D Index and visual analog scale mean scores were 0.7 (SD: 0.26) and 76.3 (SD: 16.2) respectively. Weak to moderate association (r = ?0.27 to ?0.39) between EQ-5D Index and ZBCI mean scores was observed in caregivers. Patient outcomes (sleep disorders and behavioral-psychotic symptoms) and caregiver outcomes (mood, time of caregiving) were independent predictors of caregiver burden (adjusted R² = 0.55; p < 0.0001) in the multivariate regression analysis. Caregiver's mood status was a significant determinant of caregiver's HRQoL, as measured by the EQ-5D Index (adjusted R² = 0.28; p = 0.006).ConclusionsPatients' psychiatric and sleep disorders and caregiver's mood significantly influenced burden and HRQoL in Brazilian PD caregivers.