Title: Supporting Timely Engagement with Palliative Care (STEP)
Funder: Department of Health and Social Care

Abstract: The aim of this project is to develop and evaluate an intervention to help patients with advanced cancer and their clinicians make informed decisions about palliative care. For patients with advanced cancer, palliative care received at least 3-6 months before death can improve symptoms, reduce hospital admissions, improve quality of life and enable patients to make choices about their care [1-6]. In a UK population of 3,950 patients with advanced cancer, the median duration of palliative care was only 36 days. We have demonstrated in our current study Time4PallCare that this short time is insufficient to maximise the benefits of palliative care. Initiating a conversation about palliative care is challenging for some health professionals and patients often have unmet information needs and misconceptions about the role of palliative care. Of 31 inpatient and outpatient oncology units across 20 hospitals within Yorkshire and Humber only three had information about palliative care available to patients with cancer. In the proposed project we will work closely with patients and clinicians to develop the STEP intervention. STEP will consist of a patient decision aid and clinician training module designed to facilitate a timely and informed conversation about palliative care. The intervention will be developed following the UK Medical Research Council (UKMRC) framework for developing complex interventions [20,21] and the International Patient Decision Aids (IPDAS) guideline [22,23]. The Ottawa Decision Support Framework (ODSF) is the conceptual framework which underpins the proposed study [24-25]. We will test the intervention within routine care in oncology outpatients clinics and GP practices to ensure it is acceptable and feasible. We will evaluate its impact on practice and develop an implementation toolkit to support its implementation and continued evaluation across the NHS. In July 2016 Leeds became a pilot site for Public Health England s Early Supportive Care Initiative [7]. The initiative aims to improve integration of palliative care within cancer services but does not provide mechanisms to overcome existing barriers which include clinicians feeling ill equipped to discuss palliative care and patient misconceptions about its role. This project is aligned with current government policy, is a national clinical priority and has the potential to be used within advanced cancer pathways across the NHS.

Lay abstract: The aim of this project is to develop an intervention to help patients and their clinicians make timely informed decisions about palliative care. For patients with advanced cancer, several research studies [1-6] have shown that early access to palliative 3-6 months before death care can improve quality of life, reduce emergency hospital admissions, minimise aggressive cancer treatments and enable patients to make choices about their end of life care, including exercising the choice to die at home. Our research undertaken in a UK population of almost four thousand patients with advanced cancer found that the average duration of palliative care was only 6 weeks and more than a third of patients did not receive any palliative care at all. One of the reasons patients are referred late or not at all is that it can often be very difficult for clinicians to decide when and how to initiate a conversation about palliative care. In this project we will work closely with patients and clinicians to develop the STEP intervention. STEP will consist of a patient decision aid and clinician training module designed to facilitate a timely and informed conversation about palliative care for patients with advanced cancer. We will test the intervention within routine care in oncology outpatients clinics and within GP practices to ensure it is acceptable and feasible. We will evaluate its impact on practice and develop an implementation toolkit to support its implementation and continued evaluation across the NHS.

Research activity codes: 7.2 END OF LIFE CARE
Health categories: CANCER AND NEOPLASMS