title: Caregivers' assessments of preference-based quality of life in Alzheimer's disease.
abstract: BACKGROUND
  This study was designed to evaluate the feasibility, reliability, and validity of use of caregivers' ratings of two health preference measures as outcomes for cost-effectiveness analyses in persons with very mild to moderate Alzheimer's disease (AD).
  
  
  METHODS
  Caregivers completed ratings of preference for AD patients' health by use of the EuroQol-5D system (EQ-5D) and the Health Utilities Index Mark 2 (HUI2). They also rated patients' cognition, mood, burden, AD-specific and generic health-related quality of life (QOL), and activities of daily living.
  
  
  RESULTS
  Caregivers' HUI2 scores were reliable. Neither the caregiver ratings of the patients' health by use of the EQ-5D nor the HUI2 had a relationship with severity of cognitive impairment. Both the EQ-5D and the HUI2 had expected relationships with caregivers' assessments of patients' function, AD-specific QOL, and physical and mental health and selected subscales of the measures of AD-specific QOL and overall health. In addition, caregiver scores showed relationships with patient self-rated function, mood, and physical health but not AD-specific QOL. Caregiver burden was associated with caregivers' scores.
  
  
  CONCLUSIONS
  Caregiver-completed ratings of preference for patients' health made by use of the EQ-5D and the HUI2 have many of the characteristics of valid preference measures. However, the lack of association with patient Mini-Mental Status Exam scores and patient self-rated AD-specific QOL and the associations with caregiver subjective burden might present limitations to their use as proxy measures for cost-effectiveness analyses.
authors.affiliation: Department of Medicine, University of Pennsylvania, Philadelphia, PA, USA. Jason.karlawish@uphs.upenn.edu
authors.forename: Jason H
authors.initials: JH
authors.lastname: Karlawish
authors.forename: Art
authors.initials: A
authors.lastname: Zbrozek
authors.forename: Bruce
authors.initials: B
authors.lastname: Kinosian
authors.forename: Annemarie
authors.initials: A
authors.lastname: Gregory
authors.forename: Allison
authors.initials: A
authors.lastname: Ferguson
authors.forename: Dominique V
authors.initials: DV
authors.lastname: Low
authors.forename: Henry A
authors.initials: HA
authors.lastname: Glick
mesh_terms: D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D000544:Alzheimer Disease / Q000191:economics / Q000523:psychology*; D017028:Caregivers; D005260:Female; D006801:Humans; D008297:Male; D017063:Outcome Assessment, Health Care / Q000379:methods*; D017060:Patient Satisfaction; D011788:Quality of Life; D015203:Reproducibility of Results; D011795:Surveys and Questionnaires