title: The selection and use of outcome measures in palliative and end-of-life care research: the MORECare International Consensus Workshop.
abstract: BACKGROUND
  A major barrier to widening and sustaining palliative care service provision is the requirement for better selection and use of outcome measures. Service commissioning is increasingly based on patient, carer, and service outcomes as opposed to service activity.
  
  
  OBJECTIVE
  To generate recommendations and consensus for research in palliative and end-of-life care on the properties of the best outcome measures, enhancing the validity of proxy-reported data and optimal data collection time points.
  
  
  METHODS
  An international expert "workshop" was convened and an online consensus survey was undertaken using the MORECare Transparent Expert Consultation to generate recommendations and level of agreement. We focused on three areas: 1) measurement properties, 2) use of proxies, and 3) measurement timing. Data analysis comprised descriptive analysis of aggregate scores and collation of narrative comments.
  
  
  RESULTS
  There were 31 workshop attendees; 29 recommendations were included in the online survey, completed by 28 experts. The top three recommendations by area were the following: 1) the properties of the best outcome measures are responsive to change over time and capture clinically important data, 2) to enhance the validity of proxy data requires clear and specific guidelines to aid lay individuals' and/or professionals' completion of proxy measures, and 3) data collection time points need clear identification to establish a baseline.
  
  
  CONCLUSIONS
  Outcome measurement in palliative and end-of-life care requires the use of psychometrically robust measures that are clinically responsive, with defined data collection time points to establish a baseline and clear administration guidelines to complete proxy measures. To further the field requires clinical imperatives to more closely inform recommendations on outcome measurement.
authors.affiliation: Department of Palliative Care, Policy and Rehabilitation, Cicely Saunders Institute, King's College London, London, United Kingdom. Electronic address: catherine.evans@kcl.ac.uk.
authors.forename: Catherine J
authors.initials: CJ
authors.lastname: Evans
authors.forename: Hamid
authors.initials: H
authors.lastname: Benalia
authors.forename: Nancy J
authors.initials: NJ
authors.lastname: Preston
authors.forename: Gunn
authors.initials: G
authors.lastname: Grande
authors.forename: Marjolein
authors.initials: M
authors.lastname: Gysels
authors.forename: Vicky
authors.initials: V
authors.lastname: Short
authors.forename: Barbara A
authors.initials: BA
authors.lastname: Daveson
authors.forename: Claudia
authors.initials: C
authors.lastname: Bausewein
authors.forename: Chris
authors.initials: C
authors.lastname: Todd
authors.forename: Irene J
authors.initials: IJ
authors.lastname: Higginson
mesh_terms: D006302:Health Services Research / Q000379:methods*; D038622:Internationality; D010043:Outcome and Process Assessment, Health Care / Q000379:methods*; D010166:Palliative Care / Q000379:methods*; D013727:Terminal Care / Q000379:methods*
keywords: Outcome assessment; consensus; evaluation studies; palliative care; research design