This study aims to improve the management of epilepsy in people with a learning disability (LD) by helping to identify the most effective treatments.
Epilepsy occurs in more than one fifth of people with a learning disability. It is often more severe and difficult to treat and is associated with high rates of psychopathology. Despite this, it is not clear how best to treat epilepsy in those with LD. Because of brain abnormalities and additional health and behavioural issues often linked to LD, treatments for epilepsy used in the general population do not always work similarly in those with LD. As a result, various treatments are used for epilepsy in people with LD without knowing which may work best.
The objectives of the LD-ROME study were to determine what treatments are currently used in people with epilepsy and LD, why these treatments are chosen, how effective and cost-effective they are, and which ones work best for patients and their carers.
We undertook an observational cohort study of individuals with epilepsy and a learning disability living in one region of the UK. Participants were randomly selected from hospital-based neurology services and community-based LD services. We collected information about the participants, the services they were receiving and other relevant disease, outcome and economic data. We assessed participants over six months so as to understand their behavioural and health state over a long period of time.
At the beginning of the project we held a focus group with service users and carers to identify the issues that they felt important for improving epilepsy treatment. This helped us to decide what data needed to be collected and what questions to cover in the qualitative interviews with the study participants.
As a result of the study, which described the broad range of management and treatment options in the LD population in our region, we are now working with partners on a grant application for a much larger clinical trial to examine the role of epilepsy nurses. Our partners include the charity Epilepsy Action, an epilepsy service user, NHS commissioner, two academic health economists, a professor of nursing and specialist clinical trial statisticians, together with members of the original research team.
Some of the findings of the LD-ROME study have been applied directly into practice in the South Cambridgeshire specialist LD epilepsy clinic. A recent audit supported by the CLAHRC Adult Theme found that both service users and GPs rated the service highly. The audit itself won an Epilepsy Action Achievements in Epilepsy Care Award and was written up in a practitioner journal by one of the Adult Theme practitioner researchers, Elizabeth Jones. (Jones, E. et al (2011). Epilepsy and Learning Disabilities. Enhancing the patient experience. Epilepsy Professional, 21:21-25).
The South Cambridgeshire LD epilepsy clinic model has now been taken up by an LD team in the East of the county.
The LD-ROME study was a collaboration with the Department of Health Economics, London School of Hygiene and Tropical Medicine
Relevant academic publications:
Pennington M, Prince E, Bateman N, Gray J, Croudace T, Redley M, Wood N, Ring H (2012). Factors influencing the costs of epilepsy in adults with an intellectual disability. Seizure: European Journal of Epilepsy. 21:205-210.
Redley M et al (2012) The involvement of parents in healthcare decisions where adult children are at risk of lacking decision-making capacity: a qualitative study of treatment decisions in epilepsy. Journal of Intellectual Disability Research (In Press).