Treatment side effects in adults with learning disability and epilepsy
Research type
Research Study
Full title
Identifying treatment Side effects in adults with an Intellectual Disability and Epilepsy: Development of a Patient-Reported Outcome Measure (PROM) for identification of Anti-Epileptic Drug (AED) side effects (SIDE-PRO)
IRAS ID
177310
Contact name
Rachel McNamara
Contact email
Sponsor organisation
Cardiff University
Duration of Study in the UK
2 years, 0 months, 0 days
Research summary
Epilepsy is common in adults with intellectual disability and recent research shows carers and professionals are concerned about physical and behavioural side effects of drug treatment. Not much is known however about how best to identify and measure these side effects and their impact on well-being. The purpose of this research is to develop a questionnaire that professionals can use in consultations with patients and carers to identify accurately important side effects of anti-epileptic drug (AED) treatment in adults with intellectual disability. Two versions of the questionnaire will be developed, one for carers to complete and another for patients where possible. These questionnaires will be based on existing measures of side effects used for adults with epilepsy in the general population. Small groups of patients, carers, and professionals will be involved in developing these questionnaires, and the extent to which side effects are associated with challenging behaviour and quality of life will be examined. It is hoped results will lead to better awareness and identification of AED side effects and in the longer term, that these results will facilitate larger scale studies of treatments to reduce side effects and improve quality of life in this group.
REC name
Wales REC 2
REC reference
15/WA/0200
Date of REC Opinion
7 Aug 2015
REC opinion
Further Information Favourable Opinion