title: A systematic review of measures of end-of-life care and its outcomes.
abstract: OBJECTIVE
  To identify psychometrically sound measures of outcomes in end-of-life care and to characterize their use in intervention studies.
  
  
  METHODS
  English language articles from 1990 to November 2005 describing measures with published psychometric data and intervention studies of end-of-life care.
  
  
  METHODS
  Systematic review of end-of-life care literature.
  
  
  METHODS
  Two reviewers organized identified measures into 10 major domains. Eight reviewers extracted and characterized measures from intervention studies.
  
  
  RESULTS
  Of 24,423 citations, we extracted 200 articles that described 261 measures, accepting 99 measures. In addition to 35 measures recommended in a prior systematic review, we identified an additional 64 measures of the end-of-life experience. The most robust measures were in the areas of symptoms, quality of life, and satisfaction; significant gaps existed in continuity of care, advance care planning, spirituality, and caregiver well-being. We also reviewed 84 intervention studies in which 135 patient-centered outcomes were assessed by 97 separate measures. Of these, 80 were used only once and only eight measures were used in more than two studies.
  
  
  CONCLUSIONS
  In general, most measures have not undergone rigorous development and testing. Measure development in end-of-life care should focus on areas with identified gaps, and testing should be done to facilitate comparability across the care settings, populations, and clinical conditions. Intervention research should use robust measures that adhere to these standards.
authors.affiliation: Center for Health Research, Kaiser Permanente Northwest, Oregon Health & Science University, 3800 N. Interstate, WIN 1060, Portland, OR 97227, USA.
authors.forename: Richard A
authors.initials: RA
authors.lastname: Mularski
authors.forename: Sydney M
authors.initials: SM
authors.lastname: Dy
authors.forename: Lisa R
authors.initials: LR
authors.lastname: Shugarman
authors.forename: Anne M
authors.initials: AM
authors.lastname: Wilkinson
authors.forename: Joanne
authors.initials: J
authors.lastname: Lynn
authors.forename: Paul G
authors.initials: PG
authors.lastname: Shekelle
authors.forename: Sally C
authors.initials: SC
authors.lastname: Morton
authors.forename: Virginia C
authors.initials: VC
authors.lastname: Sun
authors.forename: Ronda G
authors.initials: RG
authors.lastname: Hughes
authors.forename: Lara K
authors.initials: LK
authors.lastname: Hilton
authors.forename: Margaret
authors.initials: M
authors.lastname: Maglione
authors.forename: Shannon L
authors.initials: SL
authors.lastname: Rhodes
authors.forename: Cony
authors.initials: C
authors.lastname: Rolon
authors.forename: Karl A
authors.initials: KA
authors.lastname: Lorenz
mesh_terms: D006801:Humans; D017063:Outcome Assessment, Health Care; D011787:Quality of Health Care; D013727:Terminal Care / Q000592:standards*; D014481:United States