1 Hackett J, et al. BMJ Open 2018;8:e022835. doi:10.1136/bmjopen-2018-022835 Open Access 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 Julia Hackett, 1 Hilary Bekker, 2 Michael I Bennett, 1 Paul Carder, 3 Jean Gallagher, 1 Claire Henry, 4 Suzanne Kite, 5 Sally Taylor, 6 Galina Velikova, 6 Lucy Ziegler 1 To cite: Hackett J, Bekker H, Bennett MI, et al. 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. BMJ Open 2018;8:e022835. doi:10.1136/ bmjopen-2018-022835 ► Prepublication history for this paper is available online. To view these fles, please visit the journal online (http://dx.doi. org/10.1136/bmjopen-2018- 022835). Received 8 March 2018 Revised 24 April 2018 Accepted 25 April 2018 1 Academic Unit of Palliative Care, Leeds Institute of Health Sciences, University of Leeds, Leeds, UK 2 Psychological and Social Medicine, Leeds Institute of Health Sciences, University of Leeds, Leeds, UK 3 NHS Bradford and Districts CCGs, Bradford, UK 4 Hospice UK, London, UK 5 Leeds Teaching Hospitals NHS Trust, St James’s University Hospital, Leeds, UK 6 Christie Patient Centred Research, The Christie NHS Foundation Trust, Manchester, UK Correspondence to Dr Julia Hackett; J.E.Hackett@leeds.ac.uk Protocol 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 benefts. 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 Offce 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. INTRODUCTION The aim of palliative care is to relieve suffering and improve the quality of life of patients with advanced illnesses. The value of timely integration of palliative care was acknowledged over 15 years ago when WHO incorporated the phrase ‘relief of suffering by means of early identification and impeccable assessment’ within its 2002 definition of palli- ative care. For patients with advanced cancer, several randomised controlled trials 1–5 have Strengths and limitations of this study ► To the best of our knowledge, this is the frst study to develop a patient decision aid and health profes- sional training module designed to facilitate a timely and informed conversation about referral to pallia- tive care. ► Evidence synthesis and close collaboration with patients and health professionals will enable us to iteratively develop an intervention that overcomes existing barriers to integration of palliative care within cancer services. ► The research will follow the UK MRC framework for developing complex interventions and the International Patient Decision Aids guideline, and be underpinned by the Ottawa Decision Support Framework. ► The research will provide evidence of its acceptabil- ity and feasibility to patients and healthcare profes- sionals within routine care in oncology outpatient clinics and general practitioner practices. ► The research will be conducted in one country, the UK. While directly relevant to inform policy and prac- tice in this context, it is possible that patient and health professional experiences of the existing bar- riers to integration of palliative care within cancer services may vary across countries. on 16 May 2018 by guest. Protected by copyright. http://bmjopen.bmj.com/ BMJ Open: first published as 10.1136/bmjopen-2018-022835 on 14 May 2018. Downloaded from