[Family caregivers and hereditary muscular disorders: association between burden, quality of life and mental health]

Abstract

Objective: The analysis of caregiver difficulties seems important to define the life of the patient. The aim of the study was to evaluate the burden of perceived care, health-related quality of life, and mental health of family caregivers who care for patients with hereditary neuromuscular disease.

Materials and method: Fifty-nine family caregivers were investigated in the course of multidisciplinary consultations in Reims, France, between April 2002 and February 2005. Burden of perceived care, mental functioning and mental health were measured by answers to an burden interview instrument (Zarit Burden Inventory, ZBI), a health-related quality of life questionnaire (the SF-36 and General Health Questionnaire-12 items [GHQ-12]), and an instrument quantifying anxiety and depression (Hospital Anxiety and Depression scale [HAD]). The domain scores of the SF-36 were compared with those of the general population. Non-parametric correlations between scores were calculated.

Results: Thirty-five parents, 20 spouses, a sister, a grandmother and two friends cared for patients with hereditary myopathy. The average age of caregivers was 50+/-11 years; 81% were women. Ten percent of the caregivers had above-normal scores on the HAD scale, One-third perceived a significant reduction in health-related quality of life, and more half expressed a moderate or important burden according to their answers on the ZBI. Depression occurred in a great proportion of the caregivers, and they showed reduced health-related quality of life as compared with the general population.

Conclusion: Taking into account these results, it appears useful to set up a specific support for family caregivers of patients with hereditary myopathy.