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
Summary of Research
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.Summary of Results
We conducted a systematic review of anti-epileptic drugs (AEDs) in adults with intellectual disability (ID). We identified 108 measures, eight were appropriate for use with people with ID. We identified only two measures designed for use in ID populations. However, the focus of these measures is very broad, and so they may not identify the full range of side effects in ID. Side effects are likely to be under-reported and overly reliant on carer report.25 participants took part in focus groups (6 adults with intellectual disability and epilepsy, 12 doctors, 3 nurses and 4 carers) and were asked about which side effects of Anti-Epileptic Drugs (AEDs) they viewed as most important. Weight problems, behaviour and personality changes and sedation/lethargy were identified by doctors and specialist nurses as the side effects they viewed as important and most frequently reported. Carers also reported weight change, and skin rashes as important side effects. Longer term side effects noted by carers included changes in blood count and osteoporosis. Out of a total of six participants with intellectual disability (ID) and epilepsy two reported that they no longer had any side effects from AED's, but they had experienced side effects in the past. Participants with ID and epilepsy identified tiredness and a general feeling of lethargy being the most common, including feeling physically unable to participate in day to day living. There was variation in whether or not the AED side effect would be something that participants would see an epilepsy clinician about. Participants frequently reported they would just deal with the problem, or speak to parents, staff or their GP and would often rely on those people to advise them or speak to the clinician on their behalf.
Awareness of, and use of specific tools to measure side effects (e.g. the Glasgow Epilepsy Outcome Scale) was varied. Some clinicians and specialist nurses reported using these in clinic, but participants with ID and epilepsy reported finding these difficult to read/interpret and were often completed on their behalf by the epilepsy nurses. Clinicians and nurse respondents overall felt that a patient reported measure would be useful in practice and that there was a need for an appropriate measure.REC name
Wales REC 2
REC reference
15/WA/0200
Date of REC Opinion
7 Aug 2015
REC opinion
Further Information Favourable Opinion