The provision of care to adults with an intellectual disability in the UK. A Special report from the intellectual disability UK chapter ILAE.

PURPOSE: This article reflects the report by the British Branch of the International League Against Epilepsy (ILAE) Working Group on services for adults with epilepsy and intellectual disability (ID). Its terms of reference was to explore the current status of aspects of the care of people with an ID and epilepsy. METHODS: Survey content was developed from key themes identified by consensus of the working group. An electronic survey was distributed via email. The sample population was the membership of the ILAE UK, Royal College of Psychiatrists (RCPsych) Faculty of ID, Epilepsy Nurses Association (ESNA), and the Association of British Neurologists (ABN). Following a six week response period the data was then collated, anonymised and distributed to the working group in order that opinion statements could be gathered. RESULTS: The time taken for individuals with both new-onset and established epilepsy to undergo routine investigation was commonly at least 1-3 months, far beyond recommendations made by NICE (CG20). A small minority of clinicians would not consider non-pharmacological interventions including epilepsy surgery, vagus nerve stimulation, and ketogenic diet for this population. Almost universally responders are actively involved in the assessment and management of key risk areas including risk of drowning, hospitalization, medication side effects, and sudden unexpected death in epilepsy (SUDEP). CONCLUSION: This investigation identifies key themes and recommendations relating to care delivery and meeting the complex needs of people with ID and epilepsy. Adults with ID and epilepsy appear to exist in a unique, but inadequate, segment of epilepsy care delivery.

Development of a measure to assess the impact of epilepsy on people with an intellectual disability: the Glasgow Epilepsy Outcome Scale - Client version (GEOS-C).

BACKGROUND: Epilepsy is common in people with intellectual disability, yet clinicians and researchers seldom obtain information directly from the client. The development and preliminary validation of a novel measure for use with people with mild to moderate intellectual disabilities is described. METHODS: Focus group methods (6 groups; 24 participants) identified issues of concern, and qualitative analysis (NUD*IST) was applied to derive items and themes for a draft scale. Psychometric scale development techniques were then used in a pilot study and subsequent field-testing to investigate validity and reliability (n = 46). RESULTS: A total of 148 issues of concern was reduced initially to 52 and then to 42 items using these methods. The derived scale comprised sub-scales reflecting (1) concerns about having seizures; (2) about injury; (3) about issues during; and (4) after seizures; (5) about medication; (6) about what people think; and (7) about daily life. Cronbach alpha for the Glasgow Epilepsy Outcome Scale - Client version (GEOS-C) was 0.92, and ranged from 0.64-0.81 for the sub-scales. Relatively weak associations (r