Burden, perceived health status, and mood among caregivers of Parkinson's disease patients

• Published in: Movement disorders 2008-09, Vol.23 (12), p.1673-1680
• Main Authors: Martinez-Martin, Pablo, Arroyo, Susana, Rojo-Abuin, Jose Manuel, Rodriguez-Blazquez, Carmen, Frades, Belen, de Pedro Cuesta, Jesus
• Format: Article
• Language: English
• Subjects: Adult; Affect - physiology; Aged; Aged, 80 and over; assessment; Biological and medical sciences; caregiver burden; caregiver health status; Caregivers - psychology; Cost of Illness; Cross-Sectional Studies; Degenerative and inherited degenerative diseases of the nervous system. Leukodystrophies. Prion diseases; direct costs; Factor Analysis, Statistical; Female; Health Status; Humans; Linear Models; Male; Medical sciences; Middle Aged; mood; Neurology; Observation; Parkinson Disease - nursing; Parkinson Disease - psychology; Parkinson's disease; Quality of Life; Surveys and Questionnaires
• ISSN: 0885-3185; 1531-8257
• DOI: 10.1002/mds.22106

The objective of this study is to describe the characteristics of the caregivers of patients with Parkinson's disease (PD) and to analyze the association between these characteristics and caregiver burden, perceived health and mood status, and identify their predictors. A multicenter, nationwide, observational, cross‐sectional study that included 289 patient–caregiver pairs was conducted. Caregiver self‐assessments were the Hospital Anxiety and Depression Scale (HADS), EuroQol (EQ), and Zarit Caregiver Burden Inventory (ZCBI). Most caregivers in the study were women aged 60 years or thereabouts. Over two thirds were gainfully employed or housewives, 75% were patients' spouses, and the majority (96.5%) had been permanently taking care of the patient for 6 ± 5.4 years. Less than 5% of patients were in the most advanced stages of disease, and direct costs were 6,350 euros per patient per year. Caregivers had more mood disorders and worse health‐related quality of life (HRQol; EQ‐Tariff) than did the general population. Caregiver HADS and EuroQol scores displayed a weak correlation (rS = 0.01–0.28) with patient‐related variables (disease duration, HY, SCOPA‐Motor, SCOPA‐AUT, HADS, PPRS, and CISI‐PD) whereas the ZCBI correlated moderately (rS = 0.27–0.47). Among caregivers, the EQ‐Tariff was significantly lower and the HADS‐Anxiety scores significantly higher for women. ZCBI and HADS‐depression, though not EuroQol and HADS‐anxiety, scores significantly increased with increasing PD severity levels. Caregivers' affective status proved the most important factor influencing their burden and perceived health, whereas patient‐related variables influenced caregiver burden and mood but not health status. In PD, prevalence of affective disorders among patients' caregivers is high and influences both burden and HRQoL. © 2008 Movement Disorder Society