Informal carer activities, carer burden and health status in multiple sclerosis

Abstract

Objective : To explore the contribution of carer characteristics, activities and disease impact to care burden and health in the multiple sclerosis caregiver population. Design : A prospective postal survey (24 months). Setting : The study was conducted in seven treatment centres within England. Subjects : Two hundred and fifty-seven caregivers of people with multiple sclerosis. Measures : Carer activity, the Caregivers Reaction Assessment Scale (CRA), the Short Form General Health Survey (SF-36), version 2, and care-related health problems. The carer data were linked to a comprehensive patient data set which permitted dyadic variables to be created measuring shared health. Results : Carers were engaged in a wide spectrum of physical care activities; lifting was the most frequent, 74% (n = 192). Patient disease impact scores were positively correlated (P < 0.01) with higher carer activity levels (r = 0.66). The carer activity level increased over time (P < 0.001 ) by around 5% with a mean increase of 0.22 (95% confidence interval (CI) 0.12—0.3) in the carer activity summary score (scale 0—4). Disease impact was negatively correlated (P < 0.01) with carer burden r = — 0.44 (CRA composite scale), physical health status r = —0.27 (SF-36 physical component score) and mental health status r = — 0.21 (SF-36 mental component score); and positively correlated with care-related health problems r = 0.44. Hierarchical regression models explaining 39% and 49% of the variance in care burden and health problem respectively showed that disease impact and dyadic health explained most of the variance, with carer activity contributing an additional 2% to 4% of the variance (P < 0.001). Conclusion : The analysis demonstrated that greater disease impact, lower dyadic health, high carer activity and greater carer burden are related to the level of carer-related health problems. The data suggested the need to develop interventions for assessing carers and reducing their activity levels and care burden (objective and subjective).