Factors relating to carer burden for families of persons with muscular dystrophy

Objective: To assess the burden on family carers of persons with muscular dystrophy living in their homes and to determine factors contributing to carer burden. Methods: The study included 56 dyads of people with muscular dystrophy and their family carers. The variables for carer burden were compared by logistic regression in 2 carer groups ( burden +/burden -). Results: The mean age of the patients with muscular dystrophy was 32.7 years ( median 26.7, range 15 - 65 years) and that of the carers 51 years ( median 48, range 30 - 80 years). The carers reported the care burden using the Zarit Burden Inventory ( median score 23, range 0 - 57/88). Multivariate analysis produced 3 adjusted explicative factors: carer characteristics related to risk of perceived burden are self-report of poor social functioning on the SF-36 ( OR = 26.6 (2.6 - 278); p = 0.006), self report of anxiety on the Hospital Anxiety Scale ( OR = 7.1 ( 1.4 - 36); p = 0.02) and being a carer under 48 years of age ( OR = 7.8 ( 1.7 - 34.5); p = 0.007). However, it was difficult to dissociate the different health variables of the carers from each other. Conclusion: This approach should lead to better decision-making by medical teams, patients and their carers.