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068 Patient and public involvement in a pan-European study to develop and evaluate a shared decision-making support tool to support decisions about antithrombotic therapy in patients with advanced cancer towards the end of life
  1. Michelle Edwards1,
  2. Kathy Seddon1,
  3. Elin Baddeley1,
  4. Annmarie Nelson1,
  5. Anette Arbjerg Højen2,
  6. Isabelle Mahe3,
  7. Mark Pearson4,
  8. Johan Langendoen5,
  9. Suzanne Cannegieter6,
  10. Stavros Konstantinides7,
  11. Simon Mooijaart8,
  12. Sebastian Smitz9,
  13. Erik Klok10,
  14. Simon Noble1
  1. 1Marie Curie Research Centre, Division of Population Medicine, Cardiff University, Cardiff, UK
  2. 2Danish Center for Health Services Research, Aalborg University Hospital, Aalborg, Denmark
  3. 3Hôpital Louis Mourier, Service de Médecine Interne Université Paris Cité, Paris, France
  4. 4Wolfson Palliative Care Research Centre, University of Hull, Hull, UK
  5. 5Department of Clinical Epidemiology, Leiden University Medical Center, Leiden, The Netherlands
  6. 6Totdaytomorrow, Rotterdam, The Netherlands
  7. 7University Medical Center Mainz, Mainz, Germany
  8. 8Department of Medicine – Internal medicine and Geriatrics, Leiden University Medical Center, Leiden, The Netherlands
  9. 9Centrum Medyczne Ksztalcenia Podyplomowego, Warszawa, Polen
  10. 10Department of Medicine – Thrombosis and Haemostasis, Leiden University Medical Center, Leiden, The Netherlands

Abstract

Introduction Serenity is a Pan-European study to develop and evaluate the clinical effectiveness of a Shared Decision-Making Support Tool (SDMST) to support shared decisions about continuing or stopping Antithrombotic Therapy (ATT) for patients with advanced cancer towards the end of life. The Serenity Patient and Public Involvement (PPI) team aim to recruit and engage with public contributors (in all 8 countries) throughout the study to ensure that research processes are acceptable to participants, improve the quality and interpretation of data and ensure that the SDMST is appropriately designed and evaluated for the study population.

Method The Serenity PPI strategy is informed by researcher and public contributor experience, reviews of international and European PPI in healthcare research, understanding of the study protocol and study aims and objectives, a researcher survey (to understand their knowledge, experiences and expectations of PPI), and consultations with work package leads. A Public Involvement in Research Impact Toolkit is being used to assess the impact of PPI in throughout the study.

Results PPI has been implemented in all eight work packages and has provided useful insights to a realist review findings, focus of patient interviews, the interpretation of qualitative and quantitative data, and the conduct of the Delphi consensus study, the development of the SDMST and the design and conduct of the randomised control trial.

Discussion The PPI strategy has been designed to be flexible and responsive to facilitators and barriers to implementation across different research methodologies and in different countries. The positive impact of PPI has been transferable across all work packages, from contributing to the intervention programme theory to the development and evaluation of the SDSMT.

Conclusions Findings on the development and impact of our PPI strategy to produce recommendations to guide future implementation of PPI for multi-national studies to develop shared-decision making support tools.

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