Developing patient-centred, feasible alternative care for adult emergency department users with epilepsy: protocol for the mixed-methods observational ‘Collaborate’ project

Abstract

IntroductionEmergency department (ED) visits for epilepsy are common, costly, often clinically unnecessary and typically lead to little benefit for epilepsy management. An ‘Alternative Care Pathway’ (ACP) for epilepsy, which diverts people with epilepsy (PWE) away from ED when ‘999’ is called and leads to care elsewhere, might generate savings and facilitate improved ambulatory care. It is unknown though what features it should incorporate to make it acceptable to persons from this particularly vulnerable target population. It also needs to be National Health Service (NHS) feasible. This project seeks to identify the optimal ACP configuration.Methods and analysisMixed-methods project comprising three-linked stages. In Stage 1, NHS bodies will be surveyed on ACPs they are considering and semi-structured interviews with PWE and their carers will explore attributes of care important to them and their concerns and expectations regarding ACPs. In Stage 2, Discrete Choice Experiments (DCE) will be completed with PWE and carers to identify the relative importance placed on different care attributes under common seizure scenarios and the trade-offs people are willing to make. The uptake of different ACP configurations will be estimated. In Stage 3, two Knowledge Exchange workshops using a nominal group technique will be run. NHS managers, health professionals, commissioners and patient and carer representatives will discuss DCE results and form a consensus on which ACP configuration best meets users’ needs and is NHS feasible.Ethics and disseminationEthical approval: NRES Committee (19/WM/0012) and King’s College London ethics Committee (LRS-18/19-10353). Primary output will be identification of optimal ACP configuration which should be prioritised for implementation and evaluation. A pro-active dissemination strategy will make those considering developing or supporting an epilepsy ACP aware of the project and opportunities to take part in it. It will also ensure they are informed of its findings.Project registration numberResearchregistry4723.

Patient views on use of emergency and alternative care services for adult epilepsy: A qualitative study

“…A qualitative interview study was undertaken to provide a detailed account of PWEs’ views about emergency care, as part of our ongoing research to develop patient-centred, feasible alternative care options for adult ED users with epilepsy [ 31 ]. This study received ethics approval by the King’s College London Psychiatry, Nursing and Midwifery Ethics Committee (LRS-18/19-10353).…”

“…A constant comparative approach was used to interrogate the data and identify factors influencing individual participant decisions and preferences. Once complete, a summary of initial findings was presented in October 2019 to a multidisciplinary group of clinicians to elicit their feedback [ 31 ].…”

Clinically unnecessary and avoidable emergency health service use for epilepsy: A survey of what English services are doing to reduce it

“…It is unclear therefore whether they will be acceptable to the target population. For instance, available alternative care packages may not encapsulate the things PWE want [11].…”

Developing and validating a clinical prediction model to predict epilepsy-related hospital admission or death within the next year using administrative healthcare data: a population-based cohort study protocol

“…The admitted PWE are typically seen by junior doctors and physicians without particular expertise in epilepsy and frequently discharged without specialist consultation or referral [7, 8, 11], representing missed opportunity for risk mitigation at a time when this may be crucial [7]. Such admissions could be avoided by early prediction of high-risk groups (through providing non-specialists such as general practitioners (GPs), paramedics, and physicians with tools for early prediction) because epilepsy is an ambulatory-care-sensitive condition [8, 12, 13]; meaning the high-risk groups are amenable to preventive targeting with scheduled specialist and community resources, diversion to alternative care pathways, optimised self-management, and accelerated medication reviews [14, 15]. Notwithstanding this, there are currently no CPMs for ED or hospital admissions in PWE.…”