title: Development of a supportive care measure for economic evaluation of end-of-life care using qualitative methods.
abstract: BACKGROUND
  An imperative to assess the economic impact of care at the end of life is emerging in response to national policy developments in a number of settings. Current focus on health benefits in economic evaluation may not appropriately capture benefits of interventions at the end of life. No instruments are available for measuring such benefits for economic evaluation of end-of-life care.
  
  
  OBJECTIVE
  To develop a descriptive system for a measure for use in economic evaluation of end-of-life care.
  
  
  METHODS
  An initial phase of in-depth interviews was conducted to develop conceptual attributes for inclusion in a measure; a second phase of semi-structured repeat interviews with a subsample of informants was carried out to clarify and confirm the final set of attributes and to develop meaningful wording for a measure.
  
  
  METHODS
  In total, 23 older people from three groups across the dying trajectory: older people (1) within the general population, (2) living in residential care and (3) receiving palliative care.
  
  
  RESULTS
  Interviews suggested that the important domains to include within this framework from the perspective of those approaching the end-of-life are choice/having a say in decision-making, love and affection/being with people who care, freedom from physical suffering, freedom from emotional suffering, dignity and self-respect, support, and preparation. A full descriptive system comprising seven questions, each representing one attribute, was developed.
  
  
  CONCLUSIONS
  Economic evaluation should reflect the broader benefits of end-of-life care. Although the supportive care measure developed here requires validation and valuation, it provides a substantial step forward in appropriate economic evaluation of end-of-life care.
authors.affiliation: 1School of Oral and Dental Sciences, University of Bristol, Bristol, UK.
authors.forename: Eileen J
authors.initials: EJ
authors.lastname: Sutton
authors.forename: Joanna
authors.initials: J
authors.lastname: Coast
mesh_terms: D000368:Aged; D000369:Aged, 80 and over; D003362:Cost-Benefit Analysis; D005260:Female; D017051:Hospice Care; D006801:Humans; D007407:Interviews as Topic; D008297:Male; D017063:Outcome Assessment, Health Care; D036301:Qualitative Research; D011788:Quality of Life / Q000523:psychology*; D057566:Self Report; D013727:Terminal Care / Q000191:economics* / Q000458:organization & administration / Q000523:psychology*
keywords: End-of-life care; aged; cost-effectiveness; outcome measures