title: Measuring Experience With End-of-Life Care: A Systematic Literature Review.
abstract: BACKGROUND
  Increasing interest in end-of-life care has resulted in many tools to measure the quality of care. An important outcome measure of end-of-life care is the family members' or caregivers' experiences of care.
  
  
  OBJECTIVE
  To evaluate the instruments currently in use to inform next steps for research and policy in this area.
  
  
  METHODS
  We conducted a systematic review of PubMed, PsycINFO, and PsycTESTS(®) for all English-language articles published after 1990 using instruments to measure adult patient, family, or informal caregiver experiences with end-of-life care. Survey items were abstracted and categorized into content areas identified through an iterative method using three independent reviewers. We also abstracted information from the most frequently used surveys about the identification of proxy respondents for after-death surveys, the timing and method of survey administration, and the health care setting being assessed.
  
  
  RESULTS
  We identified 88 articles containing 51 unique surveys with available content. We characterized 14 content areas variably present across the 51 surveys. Information and care planning, provider care, symptom management, and overall experience were the most frequent areas addressed. There was also considerable variation across the surveys in the identification of proxy respondents, the timing of survey administration, and in the health care settings and services being evaluated.
  
  
  CONCLUSIONS
  This review identified several comprehensive surveys aimed at measuring the experiences of end-of-life care, covering a variety of content areas and practical issues for survey administration. Future work should focus on standardizing surveys and administration methods so that experiences of care can be reliably measured and compared across care settings.
authors.affiliation: VA Greater Los Angeles, Los Angeles, California, USA. Electronic address: jessicapenn@gmail.com.
authors.forename: Jessica Penn
authors.initials: JP
authors.lastname: Lendon
authors.affiliation: RAND Corporation, Santa Monica, California, USA.
authors.forename: Sangeeta C
authors.initials: SC
authors.lastname: Ahluwalia
authors.affiliation: VA Greater Los Angeles, Los Angeles, California, USA; David Geffen School of Medicine at UCLA, Los Angeles, California, USA; RAND Corporation, Santa Monica, California, USA.
authors.forename: Anne M
authors.initials: AM
authors.lastname: Walling
authors.affiliation: VA Greater Los Angeles, Los Angeles, California, USA.
authors.forename: Karl A
authors.initials: KA
authors.lastname: Lorenz
authors.affiliation: RAND Corporation, Santa Monica, California, USA.
authors.forename: Oluwatobi A
authors.initials: OA
authors.lastname: Oluwatola
authors.affiliation: RAND Corporation, Arlington, Virginia, USA.
authors.forename: Rebecca
authors.initials: R
authors.lastname: Anhang Price
authors.affiliation: RAND Corporation, Santa Monica, California, USA.
authors.forename: Denise
authors.initials: D
authors.lastname: Quigley
authors.affiliation: Brown University, Providence, Rhode Island, USA.
authors.forename: Joan M
authors.initials: JM
authors.lastname: Teno
mesh_terms: D017028:Caregivers / Q000706:statistics & numerical data*; D003258:Consumer Behavior / Q000706:statistics & numerical data*; D005260:Female; D006801:Humans; D008297:Male; D017063:Outcome Assessment, Health Care / Q000379:methods; D010166:Palliative Care / Q000706:statistics & numerical data*; D017060:Patient Satisfaction / Q000706:statistics & numerical data*; D015203:Reproducibility of Results; D012680:Sensitivity and Specificity; D011795:Surveys and Questionnaires; D013727:Terminal Care / Q000706:statistics & numerical data*
keywords: End-of-life care; assessment; family caregivers