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

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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 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.

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.

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Acknowledgments

PRISMA is funded by the European Commission's Seventh Framework Programme (contract number: Health-F2-2008-201655) with the overall aim to coordinate high-quality international research into EOL cancer care. PRISMA aims to provide evidence and guidance on best practice to ensure that research can measure and improve outcomes for patients and families. PRISMA activities aim to reflect the preferences and cultural diversities of citizens and the clinical priorities of clinicians and appropriately measure multidimensional outcomes across settings where EOL care is delivered. Principal Investigator: Richard Harding. Scientific Director: Irene J Higginson. Work package 4 lead: Claudia Bausewein. PRISMA members: Gwenda Albers, Barbara Antunes, Ana Barros Pinto, Claudia Bausewein, Dorothee Bechinger-English, Hamid Benalia, Lucy Bradley, Lucas Ceulemans, Barbara A Daveson, Luc Deliens, Noël Derycke, Martine de Vlieger, Let Dillen, Julia Downing, Michael Echteld, Natalie Evans, Dagny Faksvåg Haugen, Lindsay Flood, Nancy Gikaara, Barbara Gomes, Marjolein Gysels, Sue Hall, Richard Harding, Irene J Higginson, Stein Kaasa, Jonathan Koffman, Pedro Lopes Ferreira, Johan Menten, Natalia Monteiro Calanzani, Fliss Murtagh, Bregje Onwuteaka-Philipsen, Roeline Pasman, Francesca Pettenati, Robert Pool, Tony Powell, Miel Ribbe, Katrin Sigurdardottir, Steffen Simon, Franco Toscani, Bart van den Eynden, Jenny van der Steen, Paul Vanden Berghe, and Trudie van Iersel. We would like to thank all participants for their time and engagement in the workshop. The contribution of all WP4 PRISMA members is also kindly acknowledged.

List of participants

Belgium: Luc Deliens (End-of-Life Care Research Group, Vrije Universiteit Brussels and Department of Public Health, VU University Medical Center Amsterdam/Netherlands). Canada: Paul McIntyre (Division of Palliative Medicine, Capital Health Integrated Palliative Care Service, Dalhousie University, Halifax). Georgia: Ioseb Abesadze (Cancer Prevention Center, Palliative Care, Tbilisi). Germany: Claudia Bausewein (German Association for Palliative Medicine, Berlin), Christine Adis (University Hospital Charité, Berlin), Christof Müller-Busch (German Association for Palliative Medicine, Berlin), Lukas Radbruch (Department of Palliative Medicine, University Hospital Bonn, Malters Hospital Bonn), Steffen Simon (German Association for Palliative Medicine, Berlin), and Raymond Voltz (Centre for Palliative Medicine, University of Cologne). Hungary: Katalin Hegedus (Institute of Behavioural Sciences, Semmelweis University, Budapest). Ireland: Phil Larkin (School of Nursing and Midwifery, University College Dublin and Our Lady's Hospice, Dublin). Italy: Cinzia Brunelli (Rehabilitation and Palliative Care Unit, IRCCS Fundation National Cancer Institute, Milan), Massimo Costantini (Regional Palliative Care Network, National Cancer Research Institute, Genoa), and Franco Toscani (Fondazione ‘Lino Maestroni’, Istituto di Ricerca in Medicina palliativa, ONLUS, Cremona). Netherlands: Michael Echteld (EMGO Institute, Vrije Universiteit Medisch Centrum Amsterdam). Norway: Dagny Faksvåg Haugen (Faculty of Medicine, NTNU, Trondheim). Poland: Dominik Krzyzanowski (Department of Public Health Department of Medical Social Sciences, Wroclaw Medical University) and Małgorzata Krajnik (Department of Palliative Care, Collegium Medicum of the Nicolaus Copernicus University, Bydgoszcz). Portugal: Pedro Lopes Ferreira (Centro de Estudos e Investigação em Saúde da Universidade de Coimbra), Bárbara Antunes (Centro de Estudos e Investigação em Saúde da Universidade de Coimbra). Spain: Marjolein Gysels (Fundacio Clinic per a la Recerca Biomedica, Barcelona, PRISMA WP). Switzerland: Steffen Eychmüller (Palliativzentrum, Kantonsspital, St. Gallen). Uganda: Julia Downing (African Palliative Care Association, Kampala). United Kingdom: Irene Higginson (Department of Palliative Care, Policy and Rehabilitation, King's College London), Richard Harding (Department of Palliative Care, Policy and Rehabilitation, King's College London), Barbara Daveson (Department of Palliative Care, Policy and Rehabilitation, King's College London), Barbara Gomes (Department of Palliative Care, Policy and Rehabilitation, King's College London), Hamid Benalia (Department of Palliative Care, Policy and Rehabilitation, King's College London), Teresa Beynon (Guy's and St Thomas' NHS Foundation Trust, London), Elmien Brink (King's College Hospital NHS Foundation Trust, London), and Maggie Bisset (Camden Primary Care Trust, London).

Author information

Authors and Affiliations

  1. Department of Palliative Care, Policy & Rehabilitation, King’s College London, London, UK

    Steffen T. Simon, Irene J. Higginson, Richard Harding, Barbara A. Daveson, Abdelhamid Benalia & Claudia Bausewein

  2. Department of Palliative Medicine and Clinical Trials Center Cologne (BMBF 01KN1106), University of Cologne, Cologne, Germany

    Steffen T. Simon

  3. Fundacio Clinic per a la Recerca Biomedica, Barcelona, Spain

    Marjolein Gysels

  4. End-of-Life Care Research Group, Vrije Universiteit Brussel, Brussels, Belgium

    Luc Deliens

  5. Department of Public Health, Palliative Care Center of Expertise, VU University Medical Center, Amsterdam, Netherlands

    Luc Deliens

  6. Department of Public and Occupational Health, VU University Medical Center, Amsterdam, Netherlands

    Michael A. Echteld

  7. Department of Palliative Medicine, University Bonn, Bonn, Germany

    Lukas Radbruch

  8. Fondazione “Lino Maestroni” ONLUS, Istituto di Ricerca in Medicina Palliativa, Cremona, Italy

    Franco Toscani

  9. Division of Medical and Social Sciences, Department of Public Health, Medical University in Wroclaw, Wroclaw, Poland

    Dominik M. Krzyzanowski

  10. Regional Palliative Care Network, IRCCS AOU San Martino - IST, Genoa, Italy

    Massimo Costantini

  11. African Palliative Care Association, Kampala, Uganda

    Julia Downing

  12. Centre for Health Studies and Research, University of Coimbra, Coimbra, Portugal

    Pedro L. Ferreira

  13. King’s College London, Department of Palliative Care, Policy and Rehabilitation, Cicely Saunders Institute, Bessemer Road, London, SE5 9PJ, UK

    Steffen T. Simon

Authors
  1. Steffen T. Simon
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  2. Irene J. Higginson
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  3. Richard Harding
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  4. Barbara A. Daveson
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  6. Luc Deliens
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  7. Michael A. Echteld
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  8. Lukas Radbruch
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  9. Franco Toscani
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  10. Dominik M. Krzyzanowski
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  11. Massimo Costantini
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  12. Julia Downing
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  13. Pedro L. Ferreira
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  14. Abdelhamid Benalia
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  15. Claudia Bausewein
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on behalf of PRISMA

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Correspondence to Steffen T. Simon.

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Simon, S.T., Higginson, I.J., Harding, R. et al. Enhancing patient-reported outcome measurement in research and practice of palliative and end-of-life care. Support Care Cancer 20, 1573–1578 (2012). https://doi.org/10.1007/s00520-012-1436-5

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  • DOI: https://doi.org/10.1007/s00520-012-1436-5

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