Title: SCENE: Improving quality of life and health outcomes of patients with psychosis through a new structured intervention for expanding social networks
Funder: Department of Health and Social Care

Abstract: AIMS AND OBJECTIVES The overall aim of this programme is to improve quality of life and health outcomes for patients with psychosis through expanding their social networks. We will refine and test a targeted, standardized intervention to expand social networks of patients with psychosis, develop a training module for different mental health professionals, and specify implementation plans in collaboration with patients and professionals. BACKGROUND AND RATIONALE About 120,000 patients with psychosis are being cared for in secondary services in the NHS at any point of time. Their social networks are much smaller than those of the general population and of other patient groups, and are dominated mainly by family members. Social isolation can have a negative impact on patients quality of life and other health outcomes, including symptoms, substance abuse, crises and hospitalisations. Evidence suggests that interventions directly targeting the social networks of these patients may be effective, and that larger networks are linked with better health outcomes. The need for interventions to increase the social networks of patients with psychosis is already acknowledged in many areas in the NHS. However, the current evidence base for such interventions is small, and refers to trials conducted in other countries with different social and health care systems. Thus, interventions with positive evidence from other countries require adjusting to the context of the NHS. RESEARCH PLAN The research comprises seven work packages (WPs). All data collection will be done in inner-city, semi-urban and rural areas (Devon, East London, Luton/Bedfordshire, and North East). In WP1, we will assess social networks, i.e. the number of meaningful social contacts in a week, of 100 patients with psychosis, and explore their willingness to expand their network and participate in a trial. This will determine the most appropriate social network size to be used as an inclusion criterion in a trial, estimate recruitment rates and present information about the trial. In WP2 initial ideas about the intervention based on existing evidence will be refined in four focus groups with different stakeholders, and eight in-depth interviews with socially isolated patients. In WP3, the intervention will be tested and further specified in an exploratory testing. Six mental health professionals with different backgrounds will deliver the intervention to four patients each. We will assess both patients and professionals experiences through open interviews, and analyse audio-taped sessions. Based on the findings, we will write a detailed manual for the intervention and specify a training module. WP4 will be a feasibility trial to inform the design of the full trial and refine the intervention further. In WP5, the clinical and cost-effectiveness of the intervention will be tested in a full randomized controlled trial with an internal pilot. The total sample size will be 453 patients. The patients will be assessed at baseline, after 6 months (end of intervention), 12 and 18 months. Qualitative process evaluation and mediator analysis will be carried out to explore whether quality of life as the primary outcome has indeed been improved through expanded social networks, as hypothesized. In WP6, we will explore the best way to deliver the intervention in the NHS, considering the service organization for patients with psychosis at that time. A web-based training module and implementation plans will be developed to facilitate dissemination in practice. A Lived Experience Advisory Panel, consisting of 8 patients, will be formed at the beginning of the project and contribute to all work packages. We will work with the LEAP to develop research consent procedures and topic guides, and to analyse and interpret results. PROJECTED OUTPUT AND DISSEMINATION We will disseminate the findings through publications in peer-reviewed journals and conference presentations, and through existing professional networks. An interactive website with sections for patients, professionals and service commissioners, and social media will consistently provide updates about the research and its findings. A web-based training package and implementation plans will be embedded within the website and disseminated amongst mental health professionals. Workshops for NHS Trusts and service user organisations will be delivered in collaboration with the LEAP. BENEFITS TO PATIENTS AND NHS An intervention to increase the social networks of patients with psychosis will have substantial benefits for patients and the NHS at large. Increased social networks will improve the quality of life of many thousands of isolated and vulnerable patients, and enable them to benefit from wider social support, thus reducing both the on-going pressure on health services to provide such support and the need for costly crisis interventions through home treatment and in-patient care. The option to deliver the intervention through different professional groups will facilitate the implementation at the end of the programme, as it is difficult to anticipate how precisely services for these patients will be organized in more than five years time. Implementation will be supported through specified plans that are informed by quality improvement methods.

Lay abstract: Psychosis affects 1-2% of the population. People with psychosis tend to perceive and interpret events differently from those around them, and are often socially withdrawn. Psychosis can last for decades and cause much distress to patients and carers. In the NHS, these patients receive medication, practical support and sometimes talking therapies. Yet, these treatments have limited benefit, and many patients remain socially isolated. This can lead to a further decline in health with more hospital stays and poor quality of life. The proposed research will try an approach that is different from what health services currently do. In studies in other countries, services have helped patients to expand their social networks through activities, such as hobbies, that involve meeting and communicating with other people. These initiatives have been successful. We will now see whether we can help patients in the NHS in a similar way. For this, we propose several research studies, involving patients and different health professionals throughout the process. In the planned intervention, a health professional will discuss with a patient all current social contacts and possibilities to expand the social network. The two will agree on some new activities and have further meetings over a six month period for more discussions and support. The idea is that patients will expand their social networks and through this have a better quality of life, fewer symptoms and better chances to avoid crises. The research will interview patients in different parts of the country to find out what their social networks are, how these networks can be expanded, and how the internet might be used to support this. We will also discuss with patients and health professionals how to refine the intervention so that patients will accept it and benefit from it. We will then test the intervention with 24 patients to see how it works. Based on the findings we will revise the approach, and then ask more than 500 patients across different locations in England to participate in a larger study testing whether the new approach does actually improve patients quality of life and mental health. During the study all patients will continue with their normal care. In addition, some will receive the intervention to expand their social networks, mainly through engaging in activities that require personal contacts. The other patients will not receive it. After 6, 12 and 18 months, we will interview all patients. We will then compare quality of life, mental health and treatment costs in the two groups and test the effectiveness and cost-effectiveness of the intervention. Finally, we will see how the intervention can be best implemented in the NHS and work with patients and professional groups to share our findings widely.

Research activity codes: 7.1 INDIVIDUAL CARE NEEDS
Health categories: MENTAL HEALTH