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.

Bone health, intellectual disability and epilepsy: An observational community-based study.

OBJECTIVES: Intellectual disability (ID) and epilepsy are independent risk factors for osteoporosis. Diverse predisposing factors influence this, for example in ID, genetics and poor nutrition and in epilepsy, anti-seizure medication (ASM). Around 25% people with ID have epilepsy, majority treatment resistant. ASMs polypharmacy is common. However, little is known about the bone-related characteristics of this vulnerable group. A prospective observational cohort study of bone profile across a community ID Epilepsy service was undertaken to understand this. MATERIALS & METHODS: Participants were on minimum 2 years of ASMs. Baseline demographics, epilepsy data, bone metabolism biomarkers, bone mineral density (BMD) and vitamin D levels were collected. Doses needed to correct vitamin D insufficiency/deficiency were calculated. RESULTS: At baseline, of 104 participants, 92 (90.2%) were vitamin D insufficient/deficient. Seventy-six (73.1%) had a DEXA scan, 50 of whom-in the osteopaenic/osteoporotic range. DEXA scores between ambulant and non-ambulant patients were significantly different (p = .05) but not for ID severity. A high alkaline phosphatase (ALP) predicted lower vitamin D levels. Borderline significance (p = .06) in calcium levels between normal and high ALP was identified. There were no significant associations between parathyroid hormone, inorganic phosphate and magnesium levels, with vitamin D status or DEXA hip T-scores. Normalizing vitamin D levels (mean 101.4 nmol/L) required an average of 1951IU cholecalciferol daily. CONCLUSIONS: Vitamin D deficiency is highly prevalent in people with ID and epilepsy treated with ASMs impacting likely on their bone health. Screening with vitamin D levels, ALP and DEXA in this group should be pro-actively and routinely considered.

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.

Awareness, attitudes, skills and training needs of psychiatrists working with adults with intellectual disability in managing epilepsy.

PURPOSE: Comorbid epilepsy is found in 22.5% of people with intellectual disability (ID). Responding to the continuing lack of clarity to the role of the ID psychiatrist in the United Kingdom with regards to epilepsy care, the Royal College of Psychiatrists (RCPsych) published the College Report (CR) 203 in May 2017. This proposed a three-tiered model of competency in ID epilepsy care, with minimum acceptable standards described as Bronze and greater expertise as Silver and Gold. This article documents the perceptions of ID psychiatrists as to their skills and training needs, and the perceived impact of CR203 on the profession. METHODS: An e- questionnaire, matching the standards on CR203 and encouraging comments was designed, reviewed and approved by the RCPsych ID executive faculty. The survey was sent by email to all UK-registered RCPsych ID Faculty members via the RCPsych communications. RESULTS: Of the expected 332 ID psychiatrists in the UK, 141 responses were received (42.4%). Key findings included that ID psychiatrists as a group have an interest in epilepsy but Bronze standards were frequently unmet, with variation across the UK. There was a noted lack of agreement on role among ID psychiatrists again linked to geographical variation. Regional disparity correlated to population density and proximity to tertiary neurological centres. CONCLUSION: There are significant implications on training, both pre- and post- accreditation for the ID psychiatry speciality. The CR203 standards appear to be steps in the right direction to help define the role ID psychiatrists have in the delivery of epilepsy care.

Epilepsy and intellectual disability: does epilepsy increase the likelihood of co-morbid psychopathology?

Although epilepsy is particularly common among people with intellectual disability (ID) it remains unclear whether it is associated with an increased likelihood of co-morbid psychopathology. We therefore investigated rates of mental health problems and other clinical characteristics in patients with ID and epilepsy (N = 156) as compared to patients with ID but no epilepsy (N = 596). All participants were consecutive referrals to specialist mental heath services. Specialist clinicians agreed on the mental health diagnoses by applying ICD-10 clinical criteria using information gained from interviews with key informants and the patients. Bivariate and multivariate analyses showed that patients with epilepsy were more likely to live in residential housing and have severe ID in line with previous evidence. However, the presence of epilepsy was not associated with an increased likelihood of co-morbid psychopathology. On the contrary, rates of mental health problems, including schizophrenia spectrum, personality and anxiety disorders, were significantly lower among patients with epilepsy. The results are discussed in the context of mood-stabilizing and other psychotropic effects of anti-epileptic drugs in adults with ID and epilepsy, as well as possible diagnostic overshadowing.