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

Research output: Contribution to journalArticle

Abstract

Purpose 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 standardization 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. Conclusion 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
Volume20
Issue number7
DOIs
Publication statusPublished - Jul 2012

Keywords

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

ASJC Scopus subject areas

  • Oncology

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    Simon, S. T., Higginson, I. J., Harding, R., Daveson, B. A., Gysels, M., Deliens, L., Echteld, M. A., Radbruch, L., Toscani, F., Krzyzanowski, D. M., Costantini, M., Downing, J., Ferreira, P. L., Benalia, A., & Bausewein, C. (2012). Enhancing patient-reported outcome measurement in research and practice of palliative and end-of-life care. Supportive Care in Cancer, 20(7), 1573-1578. https://doi.org/10.1007/s00520-012-1436-5