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Burden and health-related quality of life of Spanish caregivers of persons with multiple sclerosis

Department of Social Sciences, University of Salamanca, Salamanca, Spain, jrivera{at}usal.es

J. Benito-León

Department of Neurology, University Hospital '12 de Octubre ', Madrid, Spain, Centro de Investigación Biomédica en Red sobre Enfermedades Neurodegenerativas (CIBERNED), Madrid, Spain

C. Oreja-Guevara

Department of Neurology, University Hospital 'La Paz ', Madrid, Spain

J. Pardo

Department of Neurology, Hospital Quirón Madrid, Pozuelo de Alarcón, Madrid, Spain

W. Bowakim Dib

Department of Neurology, University Hospital 'Pío del Río Hortega ', Valladolid, Spain

E. Orts

Department of Neurology, Hospital 'Mancha-Centro ', Alcázar de San Juan, Ciudad Real, Spain

M. Belló

Bayer Schering Pharma AG, Barcelona, Spain

Caregiver Quality of Life in Multiple Sclerosis (CAREQOL-MS) Study Group

Little information exists about caregivers of persons with multiple sclerosis (MS). Our aims were to describe the characteristics of a sample of caregivers of persons with MS, assess their perceived burden, health-related quality of life, and investigate factors influencing this burden. We studied 278 caregivers of persons with MS, recruited from a Spanish cross-sectional survey, measuring health-related quality of life by the 36-Item Short-Form Health Survey (SF-36) and burden by the Zarit Caregiver Burden Interview. Of the caregivers, 56.8% were female and their mean age was 50.1 ± 12.6 years. Their main relationship with the person with MS was spouse/partner (52.9%) and son or daughter (25.9%). Caregiver General Health, Mental Health, Bodily Pain, and Role-emotional Functioning were the most affected dimensions on the SF-36. Multiple regression analysis showed that independent and significant predictors of burden were Role-emotional Functioning and Vitality dimensions SF-36 scores of caregivers, and the Expanded Disability Status Scale scores. The total adjusted variance explained by these variables (adjusted R²) was 0.512. Emotional factors and the disability of the person with MS were major predictors of burden. Psychological and social support should be considered to reduce caregiver burden.

Key Words: Caregivers • health-related quality of life • burden • multiple sclerosis

This version was published on November 1, 2009

Multiple Sclerosis, Vol. 15, No. 11, 1347-1355 (2009)
DOI: 10.1177/1352458509345917


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