Mortality risk in adults with intellectual disabilities and epilepsy: an England and Wales case-control study.

BACKGROUND: People with epilepsy (PWE) and people with intellectual disabilities (ID) both live shorter lives than the general population and both conditions increase the risk of death further. We aimed to measure associations between certain risk factors for death in PWE and ID. METHODS: A retrospective case-control study was conducted in ten regions in England and Wales. Data were collected on PWE registered with secondary care ID and neurology services between 2017 and 2021. Prevalence rates of neurodevelopmental, psychiatric and medical diagnoses, seizure frequency, psychotropic and antiseizure medications (ASM) prescribed, and health activity (epilepsy reviews/risk assessments/care plans/compliance etc.) recorded were compared between the two groups. RESULTS: 190 PWE and ID who died were compared with 910 living controls. People who died were less likely to have had an epilepsy risk assessment but had a greater prevalence of genetic conditions, older age, poor physical health, generalized tonic-clonic seizures, polypharmacy (not ASMs) and antipsychotic use. The multivariable logistic regression for risk of epilepsy-related death identified that age over 50, medical condition prevalence, antipsychotic medication use and the lack of an epilepsy review in the last 12 months as associated with increased risk of death. Reviews by psychiatrists in ID services was associated with a 72% reduction in the odds of death compared neurology services. CONCLUSIONS: Polypharmacy and use of antipsychotics may be associated with death but not ASMs. Greater and closer monitoring by creating capable health communities may reduce the risk of death. ID services maybe more likely to provide this holistic approach.

Quality improvement in the management of people with epilepsy and intellectual disability: the development of clinical guidance.

Introduction: This clinical guidance looks at the specific concerns of delivery of medical treatment for people with epilepsy and intellectual disability (ID). People with ID have not been included in licensing drug trials of AEDs. However, this population has an over-representation of seizure comorbidity, treatment resistance, and polypharmacy while also being vulnerable to not having their views considered.Areas covered: This review summarizes the current most robust evidence available for the use of licensed AEDs in people with epilepsy and ID. The article provides practical evidence-based clinical information to help prescribers choose the most appropriate AED from the drugs discussed. The article highlights other important individualized factors to consider before initiating or changing antiepileptic medication.Expert opinion: A 'traffic light' coding system is applied to commonly used AEDs based on the level of evidence and expert clinical experience. Managing epilepsy in the ID population requires specialist care. Treatment plans need to be holistic and tailored to accommodate an individual's comorbidities, concurrent medications, general health, social and environmental status. There is a need for large quality trial data to assess the most suitable AEDs on seizure control and quality of life in this population with complex needs.