Title: Medication support interventions and strategies for people with learning disabilities - a mixed methods evidence synthesis
Funder: Department of Health and Social Care

Abstract: People with learning disability often have health conditions that mean they need to take medication. Sometimes they may take too little or too much medication, take it at the wrong time, or take medication that is no longer needed because of issues related to their disability, lack of support or other factors. It is important to understand what works best to help them use medication to improve their health. Guidelines exist but they are often too general or focused on specific health professionals (e.g., psychiatrists). Our project will find out the best ways to help people with learning disability, who may be supported by carers, ensure that they take the right medication in a way that benefits them most. We will do this by carefully reviewing literature about the experience of people with learning disability in taking medication and different ways to improve this experience. We will work closely with people with learning disability and people supporting them when doing our review. Our project has 4 phases. In phase 1, we will find and bring together all the literature about the challenges faced by people with learning disability and their carers when trying to use medication. We will analyse the literature in-depth to explore the causes of problems/barriers, how to resolve them, and ways to promote appropriate medication use. In phase 2 we will summarise all the literature about interventions to overcome these challenges and whether they are good value for money. We will assess previous studies to answer the following questions: What approaches have been planned and tested? What do they involve? Are these approaches acceptable for people with learning disability and their carers? How easy is it to put these approaches in place over a long period of time? Did they work and present a good value for money for the health and social services? Phase 3 will compare and combine our findings from Phase 1 and 2. This will allow us to see how well the interventions match the needs of people with learning disability and whether there are important gaps. In Phase 4, we will use a method that enables people with learning disability and people supporting them to fully participate and contribute towards group discussions and make recommendations for practice and future research based on their views of the combined evidence from our previous phases. Throughout the 4 phases, we will work closely with people with learning disability, their carers, and other people who are involved in providing or planning services related to medication use (e.g. support workers, doctors, pharmacists) to ensure that their perspectives are at the centre of this work. We will do this by establishing a Project Advisory Group and two patient and public involvement (PPI) groups including these people. They will work in partnership with the research team and help us decide what issues to focus on, make sense of the findings and to know what recommendations should be made. Our team has substantial expertise in reviewing literature to create new knowledge (this is called evidence synthesis) and in doing research with people with learning disability and their carers. We are therefore well placed to undertake this project, and will ensure that our findings reflect the concerns and priorities of people with learning disability and will be heard by people supporting them.

Lay abstract: Research question: How effective and cost-effective are support interventions and strategies for people with learning disability who use medications for long-term conditions? Background: People with learning disability often have chronic health conditions requiring medication. Adhering to medication as prescribed can be challenging for various reasons related to their disability and a lack of support and reasonable adjustments. In addition, there are concerns surrounding the under use of medication because of diagnostic overshadowing and the overuse of antipsychotics for managing behaviours that challenge. These scenarios of suboptimal use of medication represent a missed opportunity to improve or maintain health for people with learning disability and may cause harm and result in wasted resources. A comprehensive synthesis of evidence on interventions addressing these issues is needed to guide clinical practice and research. Aims: to complete a comprehensive evidence synthesis with embedded involvement and engagement with people with learning disability and relevant stakeholders. Objectives: (1) to gain an in-depth understanding of issues affecting medication use and the contexts in which they occur; (2) to characterise and evaluate medication support interventions for this population; (3) to identify promising interventions and evidence gaps; (4) to generate and prioritise recommendations while ensuring different perspectives are considered. Methods: A mixed methods evidence synthesis with embedded co-production of evidence with service users and stakeholders through ongoing involvement of a Project Advisory Group (PAG) and two patient and public involvement (PPI) groups (one for people with learning disability and the other for professional, carers and family members). The evidence synthesis consists of four phases: Phase 1 – a meta-ethnography of qualitative evidence on experience and perception of issues related to medication use for people with learning disability and people supporting them, and barriers and facilitators to overcome these issues; Phase 2 – a mixed methods systematic review to evaluate key features, feasibility, acceptability, effectiveness, cost-effectiveness and sustainability of medication support interventions; Phase 3 – mapping and integration of the above evidence using narratives and/or matrices to assess the fit and gaps between medication use issues and interventions; Phase 4 – nominal group technique will be used in discussions to generate and prioritise recommendations while ensuring diverse perspectives are elicited in the process. The PAG and PPI groups will advise on each phase of the synthesis and will participate in the nominal groups. Timelines for delivery: The project is expected to start in September 2022 and will be completed by the end of February 2024. Anticipated impact and dissemination: We will co-produce synthesised evidence and recommendations that can be used directly to inform practice and further research on promising medication support interventions. Our findings will be disseminated through a project website and extensive networks of people with learning disabilities and stakeholders and organisations working with them, and will cover health and social care, education, and research communities. Materials and formats used for dissemination will be guided by PAG and PPI groups.

Research activity codes: 7.1 INDIVIDUAL CARE NEEDS;7.3 MANAGEMENT AND DECISION MAKING
Health categories: MENTAL HEALTH;GENERIC HEALTH RELEVANCE