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

Clin Rehabil. 2007 Jun;21(6):563-75. doi: 10.1177/0269215507075035.


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).

MeSH terms

  • Activities of Daily Living*
  • Anxiety / epidemiology
  • Caregivers / psychology*
  • Caregivers / statistics & numerical data
  • Cluster Analysis
  • Cost of Illness
  • Depression / epidemiology
  • Dyspnea / epidemiology
  • Fatigue / epidemiology
  • Female
  • Health Status*
  • Humans
  • Male
  • Middle Aged
  • Multiple Sclerosis / epidemiology*
  • Prospective Studies
  • Severity of Illness Index
  • Sex Factors
  • Sexual Behavior
  • Surveys and Questionnaires
  • United Kingdom / epidemiology