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  • Developing a complex intervention to support timely engagement with palliative care for patients with advanced cancer in primary and secondary care in the UK: a study protocol

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Palliative care
Protocol
Developing a complex intervention to support timely engagement with palliative care for patients with advanced cancer in primary and secondary care in the UK: a study protocol
  1. Julia Hackett1,
  2. Hilary Bekker2,
  3. Michael I Bennett1,
  4. Paul Carder3,
  5. Jean Gallagher1,
  6. Claire Henry4,
  7. Suzanne Kite5,
  8. Sally Taylor6,
  9. Galina Velikova6,
  10. Lucy Ziegler1
  1. 1 Academic Unit of Palliative Care, Leeds Institute of Health Sciences, University of Leeds, Leeds, UK
  2. 2 Psychological and Social Medicine, Leeds Institute of Health Sciences, University of Leeds, Leeds, UK
  3. 3 NHS Bradford and Districts CCGs, Bradford, UK
  4. 4 Hospice UK, London, UK
  5. 5 Leeds Teaching Hospitals NHS Trust, St James’s University Hospital, Leeds, UK
  6. 6 Christie Patient Centred Research, The Christie NHS Foundation Trust, Manchester, UK
  1. Correspondence to Dr Julia Hackett; J.E.Hackett{at}leeds.ac.uk

Abstract

Introduction For patients with advanced cancer, timely access to palliative care can improve quality of life and enable patients to participate in decisions about their end-of-life care. However, in a UK population of 2500 patients who died from cancer, one-third did not receive specialist palliative care, and of those who did, the duration of involvement was too short to maximise the benefits. Initiating a conversation about palliative care is challenging for some health professionals and patients often have unmet information needs and misconceptions about palliative care. We will work closely with patients and health professionals to develop a patient decision aid and health professional training module designed to facilitate a timely and informed conversation about palliative care.

Methods and analysis This study is being conducted over 24 months from November 2017 to October 2019 and follows the UK Medical Research Council framework for developing complex interventions and the International Patient Decision Aids Guideline. The Ottawa Decision Support Framework underpins the study. The Supporting Timely Engagement with Palliative care (STEP) intervention will be developed though an iterative process informed by interviews and focus groups with patients with advanced cancer, oncologists, general practitioners and palliative care doctors. An expert panel will also review each iteration. The expert panel will consist of a patient representative with experience of palliative care, health professionals who are involved in advanced cancer care decision-making, a medical education expert and the National Council for Palliative Care director of transformation. The feasibility and acceptability of the decision aid and doctor training will be tested in oncology and general practice settings.

Ethics and dissemination Ethical approval for the study has been granted by the Office for Research Ethics Committees Northern Ireland (ORECNI), approval reference 17/NI/0249. Dissemination and knowledge transfer will be conducted via publications, national bodies and networks, and patient and family groups.

  • palliative care
  • decision aid
  • advanced cancer

This is an Open Access article distributed in accordance with the terms of the Creative Commons Attribution (CC BY 4.0) license, which permits others to distribute, remix, adapt and build upon this work, for commercial use, provided the original work is properly cited. See: http://creativecommons.org/licenses/by/4.0/

https://doi.org/10.1136/bmjopen-2018-022835

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    Footnotes

    • Contributors JH drafted the initial manuscript. JH, LZ and HB were involved in the planning of the manuscript. All authors reviewed the manuscript prior to submission. All authors were involved in the critical revision of the article for important intellectual content and provided final approval of its content. The team comprises the primary investigator (LZ) and co-investigators (HB, MIB, PC, JG, CH, SK, ST, GV). All co-investigators were involved in the conception and design of the study.

    • Funding This article presents independent research funded by the NIHR Research for Patient Benefit Scheme (PB-PG-0416-20004).

    • Disclaimer The views expressed are those of the authors and not necessarily those of the NHS, the NIHR or the Department of Health. The sponsor and funders had no involvement in the study design; collection, management, analysis and interpretation of data; writing of the report; and the decision to submit the report for publication.

    • Competing interests None declared.

    • Patient consent Not required.

    • Ethics approval Office for Research Ethics Committees Northern Ireland.

    • Provenance and peer review Not commissioned; externally peer reviewed.

    • Data sharing statement No additional data available.