I believe this research is of utmost importance, because people with learning difficulties can’t necessarily communicate the AED side effects they feel. We need to find ways of overcoming this so that their treatment can be reviewed promptly and so that we can effectively assess new treatments in this population.
Dr Rachel McNamara
Why is this research needed?
Epilepsy is more common in adults with learning disability than in the ‘general population’, and there is concern amongst professionals and carers about the physical and behavioural side effects of anti-epileptic drug (AED) treatment in this group. However, it is unclear how best to identify and measure these side effects and their impact on wellbeing.
What are the aims?
The team plans to develop a questionnaire that professionals can use in consultations with both patients and carers, to accurately identify important AED side effects in adults with learning disability.
How will the research be carried out?
During the study, two versions of the questionnaire will be developed: one for carers to complete and the others for patients complete (where possible). These will be based on existing measures of side effects that are used for adults with epilepsy in the general population. The development of the questionnaires will involve small focus groups of patients, carers and professionals; whose experiences will help the team to examine the AED side effects seen in adults with learning disability, and investigate their association with challenging behaviour and quality of life.
What difference will it make?
This project will hopefully lead to better awareness and identification of AED side effects in adults with a learning disability, and ultimately facilitate large studies of treatments with fewer side effects, thus improving quality of life for this group of people.