Quality of life for primary caregivers of muscular dystrophy patients in South Korea

Abstract

BACKGROUND: Although some studies measured the burden of caregivers and the factors that influenced their feelings of burden, few studies have measured the quality of life (QOL) for primary caregivers of patients with muscular dystrophy (MD). We assessed the QOL for primary caregivers of patients with MD in South Korea and identified factors associated with caregivers' QOL.

METHODS: Ninety dyads of patients with MD and their primary caregivers were enrolled in this study. The QOL of caregivers of patients with MD was assessed subjectively using the World Health Organization Quality of Life Assessment, Life Brief Form. Caregivers' emotional status was assessed using the Beck Depression Inventory (BDI) and family function level was evaluated using the Family APGAR scale. Patients reported their emotional status using the BDI or the Children's Depression Inventory. The functional levels of patients were evaluated by the modified Barthel Index.

RESULTS: Caregivers' QOL was statistically associated with family income, family function, emotional status of patients, level of education, and emotional status of caregivers (P < 0.05). Caregivers who were employed had a significantly higher QOL than those who were not (P < 0.05). In multiple regression analyses, emotional and employment status of caregivers was strongly associated with caregivers' QOL.

CONCLUSION: Rehabilitation teams should consider not only the physical factors of patients but also the psychological and demographic factors of primary caregivers of patients with MD