title: 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.
  
  
  METHODS
  A prospective postal survey (24 months).
  
  
  METHODS
  The study was conducted in seven treatment centres within England.
  
  
  METHODS
  Two hundred and fifty-seven caregivers of people with multiple sclerosis.
  
  
  METHODS
  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).
  
  
  CONCLUSIONS
  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).
authors.affiliation: King's College London, The Florence Nightingale School of Nursing & Midwifery, London, UK. angus.forbes@kcl.ac.uk
authors.forename: Angus
authors.initials: A
authors.lastname: Forbes
authors.forename: Alison
authors.initials: A
authors.lastname: While
authors.forename: Lucia
authors.initials: L
authors.lastname: Mathes
mesh_terms: D000203:Activities of Daily Living; D001007:Anxiety / Q000453:epidemiology; D017028:Caregivers / Q000523:psychology* / Q000706:statistics & numerical data; D016000:Cluster Analysis; D017281:Cost of Illness; D003863:Depression / Q000453:epidemiology; D004417:Dyspnea / Q000453:epidemiology; D005221:Fatigue / Q000453:epidemiology; D005260:Female; D006304:Health Status; D006801:Humans; D008297:Male; D008875:Middle Aged; D009103:Multiple Sclerosis / Q000453:epidemiology*; D011446:Prospective Studies; D012720:Severity of Illness Index; D012737:Sex Factors; D012725:Sexual Behavior; D011795:Surveys and Questionnaires; D006113:United Kingdom / Q000453:epidemiology