Title: Partnership in prostate cancer care: the feasibility of an integrated system to improve patient outcomes and experience (the ICARE-P Study)
Funder: Department of Health and Social Care

Abstract: Background Two million people in the UK live with a cancer diagnosis. With an annual increase in incidence rate of 3%, secondary care-based follow-up is becoming unsustainable. Prostate Cancer is the most common cancer in men in the UK with around 240,000 survivors and a 5-year survival of 77%. Follow-up pathways vary widely throughout the NHS. Evidence indicates that 30% of men may experience long term treatment effects or problems of psychological adjustment which frequently remain unidentified and unaddressed. The proposed research has been developed through extensive PPI work, consultation with GPs, cancer and urology specialists care providers, IT experts, and third sector organisations about what is needed to support greater continuity of care with holistic needs being met and more effective self-management encouraged from an early stage in the cancer care pathway. This led to the development of a new integrated model of continuing care which exploits the potential of technology (a novel IT system) to enable care greater coordination between General Practice and Specialist Care according to patient need, with the patient actively involved throughout. Aims To determine the acceptability, feasibility and likely impact of a new integrated model of continuing care To test the feasibility of undertaking a future cluster randomised trial of its clinical and cost effectiveness. Research Question What is the feasibility of undertaking a cluster RCT to compare a new model of integrated prostate cancer continuing and follow up care with standard care in terms of clinical and cost-effectiveness, patient-reported outcomes and experience? Plan of Investigation The research comprises two overlapping work packages. WP1 Refinement of the intervention and research development (months 1-9) Identify GP practices interested in participation in the feasibility study Recruit 15 men with prostate cancer from five GP practices and up to 20 health professionals from primary and secondary care Undertake interviews with patients and staff to explore views of barriers and facilitators to implementing the proposed intervention, and of the training needs of staff Refine staff and patient information, data collection methods and materials Test and refine procedures for gaining consent Work with Local Prostate Cancer Support Groups to test the feasibility of the recruitment and training needs of peer IT supporters (the IT-Mate) who will assist men needing help to access and complete online Holistic Needs Assessment (HNA) Develop and run a brief training workshop for the IT-Mates Adapt the Macmillan Practice nurse training package to include prostate-specific content Run the training programme for 10 Practice Nurses Integrate and test the online HNA tool into the existing Trust IT system Establish robust systems for Practice Nurse - CNS communication Gain Research Ethics and R&D approval for WP2 WP2 Implementation of the intervention, recruitment and data collection methods (months 9-26) Recruit approximately 200 men to take part in the study from the participating practices (10 intervention; 3 control) Implement the integrated care intervention for each intervention participant for up to a 12-month period Explore the extent of compliance with new working practices among health care professionals and patients Assess the feasibility of the collection of process and outcome measures at baseline, 6 months and 12 months Explore the impact of the redesign on staff workload Analyse the use of the HNA Explore patient outcome data and health economic data Design a subsequent cluster randomized RCT if indicated by study findings Potential benefits to patients The research is anticipated as providing immediate benefit to patients through greater integration of care and the earlier identification of, and coordinated response to, their needs. This is expected to improve self-efficacy, quality of life, clinical outcomes and experience of NHS care.

Lay abstract: Men with prostate cancer often have physical, psychological and social problems that are inadequately addressed by current systems of care. Increasing numbers of survivors together with pressure on NHS budgets mean that more cost-effective ways of caring for such men are needed. Greater involvement of GP teams may reduce the burden on specialist services, but evidence about how best to do this is lacking. The ICARE-P study will test the feasibility, acceptability and likely impact of a new approach in which care for men with prostate cancer is more closely shared between the specialist team, GP teams and the patient himself from an early stage in the cancer pathway. This approach is underpinned by information technology (IT), with the patient completing at 6-month intervals an on-line self-assessment (Holistic Needs Assessment), assisted if needed by peer supporters, to enable earlier identification and treatment of health-related concerns and symptoms. The HNA is currently being developed and will be piloted in eight Trusts (including University Hospitals Birmingham) in 2014/15. ICARE-P will initially investigate the views of patients and staff in General Practice and specialist teams about the feasibility of this new approach. We will then recruit 13 GP practices, and with Macmillan provide prostate cancer-related training for nurses in 10 of these; three practices will provide usual care (intervention and control practices respectively). Through the practices we will recruit approximately 200 men with varying stages of prostate cancer. Intervention practice participants will be asked to actively participate in the new pathway for one year. We will collect data to compare how health and quality of life changes in participants at intervention and control practices. These, together with routine NHS clinical data and costing information will be analysed to determine the feasibility of a subsequent trial of the cost- and clinical-effectiveness of the intervention.

Research activity codes: 7.3 MANAGEMENT AND DECISION MAKING;7.1 INDIVIDUAL CARE NEEDS
Health categories: CANCER AND NEOPLASMS