Epilepsy related multimorbidity, polypharmacy and risks in adults with intellectual disabilities: a national study.

BACKGROUND: A quarter of people with Intellectual Disability (ID) in the UK have epilepsy compared to 0.6% in the general population and die much younger. Epilepsy is associated with two-fifths of all deaths with related polypharmacy and multi-morbidity. Epilepsy research on this population has been poor. This study describes real-world clinical and risk characteristics of a large cohort across England and Wales. METHODS: A retrospective multi-centre cohort study was conducted. Information on seizure characteristics, ID severity, relevant co-morbidities, psychotropic and antiseizure drugs (ASDs), SUDEP and other risk factors was collected across a year. RESULTS: Of 904 adults across 10 centres (male:female, 1.5:1), 320 (35%) had mild ID and 584 (65%) moderate-profound (M/P) ID. The mean age was 39.9 years (SD 15.0). Seizures were more frequent in M/P ID (p < 0.001). Over 50% had physical health co-morbidities, more in mild ID (p < 0.01). A third had psychiatric co-morbidity and a fifth had an underlying genetic disorder. Autism Spectrum Disorder was seen in over a third (37%). Participants were on median two ASDs and overall, five medications. Over quarter were on anti-psychotics. Over 90% had an epilepsy review in the past year but 25% did not have an epilepsy care plan, particularly those with mild ID (p < 0.001). Only 61% had a documented discussion of SUDEP, again less likely with mild ID or their care stakeholders (p < 0.001). CONCLUSIONS: Significant levels of multi-morbidity, polypharmacy and a lack of systemised approach to treatment and risk exist. Addressing these concerns is essential to reduce premature mortality.

Parental knowledge of coeliac disease.

AIM: Little information exists regarding parental knowledge of CD at diagnosis. We aimed for assessment of parental information at disease diagnosis to help us develop a tailored coeliac information package. METHODS: Children and teenagers referred for endoscopy and duodenal biopsy, with the sole indication for the diagnosis of CD, were prospectively recruited to the study. Parents were asked information and concerns regarding use of GFD. RESULTS: Sixty-three children (median 6.9 yrs (IQR 3.71-10.94)) and families were prospectively recruited in the study. The parents were very knowledgeable with an impressive 98% of the parents understanding that GFD is the treatment of CD; 95% knowing that this treatment is for life. However, specific dietary information was lacking with one-third correctly identifying all the Gluten containing foods. Internet (70.6%) was the most common source of information. Knowing someone with CD (p = 0.038), particularly in the same household in the family (p = 0.013) and researching about the disease (p = 0.001) rather than level of parental education (p = ns) was predictive of better parental knowledge. CONCLUSION: Internet is a major influence to parental knowledge in today's age but there is a continued need for hospitals regarding provision of accurate information and alleviating anxieties regarding use of GFD.