Title: Improving the Management of Pain from Advanced Cancer in the Community (IMPACCT)
Funder: Department of Health and Social Care

Abstract: AIMS AND OBJECTIVES Our overall aim is to improve the management of cancer pain for palliative care patients and their carers who are living at home. Our principal objectives are to enable patients and their carers to more easily access support and advice, communicate their pain, obtain timely and effective medication; and to evaluate the impact of our interventions in routine care. BACKGROUND Each year in England and Wales, 140,000 people die from cancer and 105,000 will suffer cancer pain. Patients spend 65-80% of their last 6 months of life at home though many are admitted as inpatients nearer to death. For community based cancer patients, research shows that pain remains common, severe and under-treated. Barriers to good pain control include inadequate support and patient education, poor assessment and communication, and lack of access to an adequate prescription and timely analgesia. Effective interventions to address these have been described but are poorly implemented in routine practice. RESEARCH PLANS We plan a coherent and integrated programme of work that will address our four principal objectives and that will focus on enabling patients and carers to experience improved cancer pain management within routine care. Our work streams focus on: WS 1. People: An integrated system of support WS 2. Data: Routine assessment and monitoring of pain WS 3. Medicines: Good management of analgesic drugs WS 4. Evaluation: Cost effectiveness and feasibility RESEARCH TEAM We bring together senior researchers, clinicians and patients with expertise and strong track records in qualitative and quantitative methods, synthesising evidence, understanding behaviours, implementing interventions, evaluating their cost and clinical benefits, and disseminating to user communities. Through our Programme Development Grant (PDG), we have consolidated our team and demonstrated our cohesion and ability to work together successfully to deliver substantial outputs. PROGRAMME MANAGEMENT The programme will be led by Bennett, who successfully led the PDG and has a track record of leadership at national and international level. Each work stream has designated leads and staff and all applicants will meet three times per year. Bennett will meet regularly with and support work stream leads, and will be helped by a programme co-ordinator. We have secured the support of leading UK experts to act as an advisory panel. RESEARCH ENVIRONMENT Leeds offers an internationally recognised environment for conducting research across the interface between primary, secondary and palliative care sectors. Close and successful working relationships exist between Leeds Institute of Health Sciences, Clinical Trials Research Unit, Leeds Teaching Hospitals NHS Trust and Leeds Specialist Palliative Care services. This provides a perfect framework within which to undertake IMPACCT and will ensure that the findings will be readily applicable and transferable to the NHS throughout the UK. We have been given excellent support from local clinical leads, palliative care and hospice services, the West Yorkshire CLRN, Leeds Local Pharmaceutical Committee, H3Plus (the largest GP Commissioning Consortium in Leeds), and TPP (producers of SystmOne database). ANTICIPATED OUTPUTS AND IMPACT WS 1. Design and test a cancer pain pathway that allows early intervention and promotes self management. WS 2. Demonstrate the feasibility of routine cancer pain monitoring within the NHS. WS 3. Promote non-medical prescribing and develop role of community pharmacists. WS 4. Establish cost-effectiveness and feasibility of our intervention in routine care. Overall we aim to reduce distress from cancer pain in palliative care patients and reduce the impact on the NHS of avoidable admissions. Our work is transferable to other symptoms in cancer and to other advanced chronic diseases. DISSEMINATION OF FINDINGS We will work closely with our advisory panel, NHS commissioners and national clinical leads for end of life care to ensure our findings are relevant, transferable, inform policy and are implemented into the NHS. We will work with user groups to explain our work and encourage wider adoption of our findings. PATIENT AND PUBLIC INVOLVEMENT Two members of our team are patients and this has ensured that our plans have been developed with strong PPI input, and that our project designs will benefit from their ongoing contributions. We have demonstrated the ability in our PDG to connect with a wider PPI community. ETHICAL IMPLICATIONS Patients with advanced disease and their carers may be regarded as a vulnerable population though most are very happy to participate in research that follows good ethical and governance principles. We have conducted several large studies in this population and do not anticipate difficutly for our PGfAR. We recognise specific implications of interrogating NHS databases and will secure relevant approval for these projects.

Lay abstract: Each year in England and Wales, 140,000 people die from cancer and 105,000 will suffer cancer pain. Patients spend 65-80% of their last 6 months of life at home and research shows that for these patients, pain remains common, severe and under-treated, sometimes leading to hospital admission. Significant barriers to good pain control include inadequate support and advice to patients, poor assessment and communication, and lack of access to an adequate prescription and timely analgesia. We aim to improve the management of pain from advanced cancer for palliative care patients and their carers who are living at home, leading to reductions in pain related distress and reduce the impact on the NHS of avoidable admissions. Our principal objectives are to enable patients and their carers to more easily access support and advice, communicate their pain, and receive timely and effective painkillers. We will evaluate the impact of our interventions in routine care and begin to implement them. We are a strong team who have worked together successfully on a Programme Development Grant (PDG) to deliver substantial outputs. Leeds offers an internationally recognised environment for conducting research between primary, secondary and palliative care sectors. Two members of our team are patients and our plans have been developed with strong patient involvement; they will work across all work-streams on patient-related projects to ensure integrated PPI input. We have demonstrated the ability in our PDG to connect with a wider patient community. By the end of our proposed PGfAR, we will have modelled, developed and evaluated components of our complex intervention. Our PGfAR comprises a cancer pain care pathway, access to specific advice that promotes self management, a telecare system for routine assessment and monitoring of pain, greater access to non-medical prescribers and to pharmacists that can advise on painkillers, and finally a specific health economic model that enables the cost-effectiveness of our work to be evaluated. We will work closely with NHS commissioners and national clinical leads for end of life care to ensure our findings are relevant, transferable, inform policy and are implemented into the NHS. Our research programme is focused on patients with pain from advanced cancer but our work is transferable to other symptoms in advanced cancer (e.g. fatigue, breathlessness, depression), and to the palliative care of other chronic advanced diseases.

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