Title: End of life care for people with severe mental illness: an evidence synthesis (the MENLOC study)
Funder: Health and Care Research Wales (Welsh Government)

Abstract: The aim of this project is to synthesise relevant research and other appropriate evidence relating to the organisation, provision and receipt of end of life care for people with severe mental illness (including schizophrenia, bipolar disorder and other psychoses, major depression and personality disorder) who have an additional diagnosis of advanced, incurable, cancer and/or end-stage lung, heart, renal or liver failure and who are likely to die within the next 12 months. Outputs will be tailored to stakeholders, and clear implications will be drawn for the future commissioning, organisation, management and provision of clinical care. Recommendations will be made for future studies designed to inform service and practice improvements, guidance and policy. In this context, summary objectives are to: 1. locate, appraise and synthesise relevant research; 2. locate and synthesise policy, guidance, case reports and other grey and non-research literature; 3. produce outputs with clear implications for service commissioning, organisation and provision; 4. make recommendations for future research designed to inform service improvements, guidance and policy. The review will be registered with PROSPERO (a prospective register of systematic reviews). It will follow guidance from the Centre for Reviews and Dissemination (CRD) and will be reported following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) recommendations. Reflecting Evidence for Policy and Practice Information (EPPI) Centre principles, opportunities will be embedded into the project to maximise stakeholder engagement for the purposes of both shaping its focus and maximising its reach and impact. Searches will be developed initially using Medical Subject Headings (MeSH) and text words across health, social care and psychology databases from their inception. In consultation with a stakeholder advisory group, supplementary methods will be developed to identify additional material including policies, reports, expert opinion pieces and case studies. All English language items relating to the provision and receipt of end of life care for people with severe mental illness and an additional diagnosis of advanced, incurable, cancer and/or end-stage lung, heart, renal or liver failure will be included. All included citations will be assessed for quality using tools developed by the Critical Appraisal Skills Programme (CASP), or alternatives as necessary if suitable CASP tools are not available. Data will be extracted into tables, and subjected to meta-analyses where possible or thematic synthesis with help from NVivo. Strength of synthesised findings will be reported where possible using GRADE and CerQual. Information derived from the processes described above will be drawn on in an accessibly written summary. Uniquely, this synthesis will comprehensively bring together evidence on factors facilitating and hindering high-quality end of life care for people with severe mental illness, who have an additional diagnosis of advanced, incurable, cancer and/or end-stage lung, heart, renal or liver failure, and evidence relating to services, processes, interventions, views and experiences. Implications will be stated for the improvement of relevant NHS and third sector care and recommendations will be made for future research.

Lay abstract: Improving the physical health care of people with severe mental illness is a national and international priority. In this project we will identify and bring together research and other evidence relating to end of life care for people with severe mental illness who have an additional diagnosis of advanced, incurable, cancer and/or end-stage major organ failure, and who are likely to die within the next 12 months. The term ‘severe mental illness’ includes people with schizophrenia, bipolar disorder and other psychoses, major depression and personality disorder and the term ‘end-stage major organ failure’ refers to lung, heart, renal or liver failure. End of life care includes care provided in hospitals, hospices and other institutions and care provided in the home. National policy and guidance confirms that this is an important, but neglected, area of research. We will follow established procedures for the conduct of evidence syntheses to ensure the quality of what we do. We will register our study with PROSPERO, which lists all planned and ongoing systematic reviews. We will conduct a comprehensive and transparent search for research and other types of information using multiple electronic databases covering health, social care and psychological literature. We will use additional methods to identify research and other relevant literature which might not be found through database searching, including documents not published in academic journals. We will search government and other websites, and social media. We will include in our study all English language documents relating to end of life care for people with severe mental illness who have an additional diagnosis of advanced, incurable, cancer and/or end-stage major organ failure and who are likely to die within the next 12 months. We will use agreed checklists to assess the quality of each piece of research evidence we find, and use a computer programme to help organise everything we find and include. We will use recognised approaches to assessing how confident we should be in the findings and recommendations from the individual research studies we bring together. In order to describe the character of the overall literature in this area we will map all the information we find on end of life care for people with severe mental illness, before producing a comprehensive, thematic, synthesis. This will report on services, processes and interventions and on what service users, professionals and carers have said about their experiences. Our project team includes people with backgrounds as academics, mental health and end of life professionals, information specialists, service users and carers. We will set up a stakeholder advisory group including policymakers, senior managers, practitioners, academics, service users and carers. We will use members’ expertise to inform the decisions we make, and will work with them to publicise our findings in accessible ways. Our findings will identify evidence of factors helping and hindering high-quality end of life care for people with severe mental illness who have an additional diagnosis of advanced, incurable, cancer and/or end-stage major organ failure, and evidence relating to services, processes, interventions, views and experiences. We will clearly state the implications of what we find for the commissioning, provision and improvement of NHS (and other) care, and make recommendations for future research.

Research activity codes: 7.2 END OF LIFE CARE
Health categories: MENTAL HEALTH