MEdication Management in older people with Intellectual Disabilities (MEMID): a scoping review

Abstract

Introduction: People with palliative care needs often use prescription medication to achieve symptom control. Prescribing and medication use are complex, multi-step processes influenced by prescribers, patients, carers, and contexts. They are shaped by historically established divisions of labour and normative rules. However, in the care of palliative patients, approximately 20% of NHS serious incident reports involve prescription medications with causes and contributing factors poorly understood (1). Understanding the mismatches between what is intended to happen and what is experienced in practice is key to improving safety and confidence in palliative care. Phase one of this study focuses on how the processes of prescribing and medication use are intended to happen, and comprises stakeholder engagement (presented here) and a scoping review. Aim: To develop a model of intended processes of prescribing and medication use for symptom control in pallia-tive care across the contexts of home, hospital, and hospice. Methods: Stakeholder engagement was undertaken with a purposive sample of participants who had an interest in, or direct experience of, palliative medications. Invitations to participate were sent to professional networks and a patient and public involvement group. Informal conversations with a topic guide including known steps in the processes of prescribing and medication use were held either via video-call (recorded with permission) or by email. Conversations were examined for content relating to steps in the processes, and for themes that ran across multiple steps. An iterative cycle of listening, identifying steps, theme attribution and development of an intended processes model was undertaken with each recording. Results: Twenty video and one email conversations were conducted with 7 family carers, 4 pharmacists/phar-macy researchers, 4 specialist palliative care professionals, 3 non-clinical researchers and 3 general practitioners. Different steps in the intended processes of prescribing and medication use at home and in hospital were identified. Themes of decision-making, prescribing, monitoring/supply, use/administration, and stopping/disposal were all represented. Further themes of deprescribing, anticipatory medicines , and contexts of practice-including out-of-hours care-were all raised. The processes model that resulted was not linear and incorporated complex feedback loops that facilitated 'tinkering', safe-to-fail experiments, and negotiations balancing 'gut feeling' with protocols and patients' wishes. Conclusion: Engaging with carer and professional stake-holders as a preliminary step in our study provided opportunity for clarification of key concepts, exploration of the nature and diversity of experiences, and identification of knowledge gaps. Whilst our engagement work may have been limited with the inclusion of only one nursing representative and little discussion of the hospice context, these aspects together with the content and themes identified will inform the design of our scoping review using the Joanna Briggs Institute framework. Data from the stakeholder engagement and the scoping review will be combined to finalise a model of intended processes in prescribing and medication use in symptom control in palliative care. Phase two of this study is a focussed ethnography to develop an experienced processes model. Synthesising the intended (phase one) and experienced (phase two) processes models using activity theory (2) will lead to when, how, and why processes in prescribing and medication use are mis-aligned and to ways in which systems can be improved to support patients and their families. References (1) Yardley I, Yardley S, Williams H, Carson-Stevens A, Donaldson LJ. Patient safety in palliative care: A mixed-methods study of reports to a national database of serious incidents. Palliat Med. 2018;32(8):1353-62. (2) Engeström Y, Davydov V, Toulmin S, Lektorsky V, Tolman C, Cole M, et al. Introduction: Globally, around 1 in 100 adults have intellectual disabilities (ID) (synonymous with learning disability in the UK) (1) yet their needs in terms of healthcare in general and medication management in particular, are under-researched. People with ID have more comorbidities compared with those without ID and around one third of older people (≥ 50 years) with ID (OPwID) have two or more chronic conditions, putting them at risk of polypharmacy (use of multiple medicines) (2). Aim: To undertake a scoping review to gather evidence on the barriers and facilitators in the medication management of OPwID from a multi-stakeholder (patient, carer and healthcare professional) perspective. Methods: Standard scoping review methods were used. Electronic databases (Medline, PsycINFO) were searched from 2011-2021 using a range of search terms. Studies were included if they involved: OPwID without dementia (all types); healthcare professionals or caregivers caring for individuals with ID; problems related to medication use. The review was restricted to studies in the English language. The PRISMA-ScR checklist and reporting standards was used to conduct and report the review. Independent duplicate screening and data extraction was undertaken. The quality of studies was not formally assessed. A narrative synthesis was conducted to summarise the results and included barriers and facilitators associated with medicines management from patients'/carers' and professionals' perspectives. Results: Eight studies were included, of which seven used qualitative methods. The majority of studies were under-taken in Europe ((the Netherlands (2), Norway (1), Belgium (1), UK (3)) and one was conducted in the US. Patients/carers reported several barriers/facilitators: