title: A forgotten aspect of the NICE reference case: an observational study of the health related quality of life impact on caregivers of people with multiple sclerosis.
abstract: BACKGROUND
  There are few published health technology assessments that have included the impact of a disease or treatment on caregivers' health related quality of life (HRQL). The objectives of this study were to explore the overall HRQL of caregivers of people with Multiple Sclerosis compared to matched controls, and more specifically explore the impact of different levels of functioning in people with MS on caregivers' HRQL scores.
  
  
  METHODS
  A cross sectional observational study conducted as an online survey was undertaken in the UK. 200 caregivers of people with MS and 200 matched controls completed the EQ-5D, SF-36, HADS and a socio-demographic questionnaire. Caregivers also completed the Patient Determined Disease Steps questionnaire as a measure of MS severity. Differences in HRQL between caregivers and controls were assessed using t-tests and chi square analyses as appropriate. Ordinary Least Squares regression was also used to evaluate the disutility of being a caregiver compared to controls stratified by MS severity.
  
  
  RESULTS
  Caregivers reported significantly lower HRQL, as measured by the SF-36, HADS and EQ-5D, compared to matched controls. A lower level of functioning in people with MS was mirrored by lower levels of caregivers' HRQL. At the point at which mobility problems required wheelchair use caregivers reported better HRQL.
  
  
  CONCLUSIONS
  The potential impact of caregiving on HRQL is an important consideration for economic evaluations. In relation to MS, the results suggest that caregiver's HRQL deteriorates as the people with MS lose functioning; thus treatments that delay loss of function may have a benefit for caregivers as well as patients.
authors.affiliation: Oxford Outcomes Ltd, Seacourt Tower, West Way, Oxford, UK. sarah@acaster.org.
authors.forename: Sarah
authors.initials: S
authors.lastname: Acaster
authors.forename: Rodolphe
authors.initials: R
authors.lastname: Perard
authors.forename: Deven
authors.initials: D
authors.lastname: Chauhan
authors.forename: Andrew J
authors.initials: AJ
authors.lastname: Lloyd
mesh_terms: D017028:Caregivers / Q000523:psychology*; D016022:Case-Control Studies; D003430:Cross-Sectional Studies; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D009103:Multiple Sclerosis / Q000523:psychology* / Q000628:therapy; D011788:Quality of Life / Q000523:psychology*; D012959:Socioeconomic Factors; D011795:Surveys and Questionnaires
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