Title: Peer support to maintain psychological wellbeing in people with advanced cancer: A feasibility study for a Randomised Controlled Trial
Funder: Department of Health and Social Care

Abstract: Background People with advanced cancer can struggle to cope with their diagnosis, and this causes stress, anxiety and depression. Our qualitative research with patients (and their carers) demonstrates that people can and do cope well at times, using a range of coping strategies to maintain and restore wellbeing. The challenge is to develop ways of supporting people to cope well early in their illness trajectory to promote patient benefit and cost-effective use of NHS resources. Patients in our study felt that individual proactive peer support would be a valuable mechanism to learn about adaptive coping mechanisms. Learning from peers has substantive differences to learning from health professionals; it is perceived and valued differently and occurs under different conditions. Most peer support initiatives are offered in group settings and evaluated with reference to satisfaction rather than outcomes such as psychological wellbeing. There is a need to evaluate whether peer support to those with advanced cancer has an impact on psychological wellbeing. Aims of research To determine the feasibility of delivering and investigating a novel peer mentor intervention to promote and maintain psychological wellbeing in people with advanced cancer using a randomised controlled trial (RCT) design. Plan of investigation Design: This feasibility study will enable estimation of important parameters and design decisions for a full trial. Using a two armed RCT of a proactive peer mentor intervention vs. usual care (with qualitative process evaluation) for our feasibility study will enable the contextual estimation of parameters needed for a full trial: how to deliver a novel intervention in a trial context; and how to appropriately investigate this intervention. Setting, sampling and recruitment: We will recruit adults with advanced cancer from two cancer centres, using quota sampling to maximise heterogeneity. Peer mentors (with experience of cancer) will be recruited via advertising. The intervention will be delivered in a range of participant/mentor determined informal settings. Intervention: The intervention offers patient interaction with a peer mentor for a period of up to 12 weeks. Interaction between patient and mentor will be flexible, in a format and at a pace which suits the pairing including telephone contact or informal face-to-face meetings. A co-ordinator will recruit, train, assess, monitor and match mentors (n=15) with patient participants. Randomisation: Recruited patient participants will be stratified according to centre/diagnosis and block randomised to each arm by a clinical trials unit (n=33 per arm, with a nested qualitative sample of 10-15 across patient/mentor participants). Data collection: Our data collection plan maps onto our feasibility objectives, with data collected to facilitate full trial planning. We will collect data to monitor a) mentor recruitment, training, work and attrition b) mentor/participant interaction c) mentor wellbeing d) perceptions of intervention. To estimate parameters needed to design a full study we will collect data on a) participant recruitment b) trial processes including outcome measure completion c) potential intervention contamination and d) health service usage. Data from measures for future primary and secondary trial outcomes will facilitate a power calculation. Data collection points are minimised to T=0 weeks, T=4 weeks and T=12 weeks or study exit using validated brief measures and sensitive qualitative interviews to minimise participant burden. Summary of benefits to patients and the NHS The immediate benefit of this work is a feasible and robust plan for a full trial, hopefully leading to a successful application for funding. If a full trial shows that the intervention is effective, then we hope there to be both benefit to the NHS (possible reduced use of specialist and generalist palliative care services providing psychological support) and to patients (improved wellbeing) in both the short and long term.

Lay abstract: This project is one stage in testing whether a peer mentor or buddy scheme to support people living with advanced cancer benefits patients by helping them to cope better. It is developed from an interview study recently completed by our team in which we explored which strategies patients with advanced cancer and their informal carers use to cope and maintain wellbeing. The results showed us that strategies were formed outside the clinical context, developed or evolved over time and that earlier knowledge could reduce anxiety and distress. Participants appreciated contact with someone who understood their situation first-hand but in a non-group, non-clinical setting. We know from existing research and theory that these strategies fit what is believed to be helpful. We now need to test out whether an intervention addressing this preference would work in practice. We propose offering a trained volunteer buddy to patients with advanced cancer. Buddies will have first-hand knowledge of living with advanced cancer and, using novel findings from our recent study, be trained in how to talk to others about that in a non-clinical way. We will provide practical and psychological support for buddies. For a random selection of half of the patients in the study a co-ordinator will allocate a buddy who will make contact once or twice a week for up to 12 weeks. Each contact can last up to 2 hours in a form and place decided by the patient/buddy pair. Contact will end if the patient dies or if requested earlier by patient, carer or buddy . We will use short questionnaires and interviews to understand how practical it might be to fully test this service by looking at: how we provide it; what challenges a full trial may pose; and how best and when to measure patients wellbeing.

Research activity codes: 7.1 INDIVIDUAL CARE NEEDS
Health categories: CANCER AND NEOPLASMS;MENTAL HEALTH