title: Enhancing patient-reported outcome measurement in research and practice of palliative and end-of-life care.
abstract: OBJECTIVE
  Patient-reported outcome measurement (PROM) plays an increasing role in palliative and end-of-life (EOL) care but their use in EOL care and research remains varied and inconsistent. We aimed to facilitate pan-European collaboration to improve PROMs in palliative and EOL care and research.
  
  
  METHODS
  The study includes a workshop with experts experienced in using PROMs in clinical care and research from Europe, North America, and Africa. Information from presentations, and plenary and group discussions was analysed using content analysis for extracting the main themes.
  
  
  RESULTS
  Thirty-two professionals from 15 countries and eight different professional backgrounds participated in the workshop. The discussion identified: 1) the need for standardisation with improvement of existing PROMs, e.g., with a modular system and an optional item pool; 2) the aspects of further development with a multi-professional approach taking into account cultural sensitivity especially for translated versions; and 3) the need for guidance, training, and resources. An international network for sharing concepts, experiences, and solutions could enhance these steps of further development.
  
  
  CONCLUSIONS
  PROMs must be based on rigorous scientific methods and respond to patient complexity. Coordinated pan-European collaboration including researchers and clinicians is required to develop and attain quality care and systematic research in outcome measurement in palliative and EOL care.
authors.affiliation: Department of Palliative Care, Policy & Rehabilitation, King's College London, London, UK. steffen@steffensimon.de
authors.forename: Steffen T
authors.initials: ST
authors.lastname: Simon
authors.forename: Irene J
authors.initials: IJ
authors.lastname: Higginson
authors.forename: Richard
authors.initials: R
authors.lastname: Harding
authors.forename: Barbara A
authors.initials: BA
authors.lastname: Daveson
authors.forename: Marjolein
authors.initials: M
authors.lastname: Gysels
authors.forename: Luc
authors.initials: L
authors.lastname: Deliens
authors.forename: Michael A
authors.initials: MA
authors.lastname: Echteld
authors.forename: Lukas
authors.initials: L
authors.lastname: Radbruch
authors.forename: Franco
authors.initials: F
authors.lastname: Toscani
authors.forename: Dominik M
authors.initials: DM
authors.lastname: Krzyzanowski
authors.forename: Massimo
authors.initials: M
authors.lastname: Costantini
authors.forename: Julia
authors.initials: J
authors.lastname: Downing
authors.forename: Pedro L
authors.initials: PL
authors.lastname: Ferreira
authors.forename: Abdelhamid
authors.initials: A
authors.lastname: Benalia
authors.forename: Claudia
authors.initials: C
authors.lastname: Bausewein
mesh_terms: D035843:Biomedical Research / Q000379:methods; D003299:Cooperative Behavior; D005060:Europe; D006801:Humans; D007391:International Cooperation; D017063:Outcome Assessment, Health Care / Q000379:methods*; D010166:Palliative Care / Q000379:methods*; D011785:Quality Assurance, Health Care; D013727:Terminal Care / Q000379:methods*