Enhancing patient-reported outcome measurement in research and practice of palliative and end-of-life care

Steffen T. Simon*, Irene J. Higginson, Richard Harding, Barbara A. Daveson, Marjolein Gysels, Luc Deliens, Michael A. Echteld, Lukas Radbruch, Franco Toscani, Dominik M. Krzyzanowski, Massimo Costantini, Julia Downing, Pedro L. Ferreira, Abdelhamid Benalia, Claudia Bausewein, PRISMA, Natalia Monteiro Calanzani (Member of Consortium)

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

Abstract / Description of output

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.

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.

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.

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.

Original languageEnglish
Pages (from-to)1573-1578
Number of pages6
JournalSupportive Care in Cancer
Issue number7
Publication statusPublished - Jul 2012

Keywords / Materials (for Non-textual outputs)

  • Outcome measurement
  • PROM
  • Cancer
  • Palliative care
  • End-of-life care
  • Research
  • Europe


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