Does intellectual disability increase sudden unexpected death in epilepsy (SUDEP) risk?

Young, Charlotte; Shankar, Rohit; Palmer, Joanne; Craig, John; Hargreaves, Claire; McLean, Brendan; Cox, David A.; Hillier, R.

doi:10.1016/j.seizure.2014.10.001

Cited by 79 publications

(32 citation statements)

References 56 publications

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“…Other studies have reported increased mortality rates among people with intellectual disability and epilepsy, 10 with a particular concern over the contribution of sudden unexpected death associated with epilepsy. 20,21 Mortality among people with Down syndrome has been more widely studied. [22][23][24][25] The findings from these investigations are consistent with the high risk of death we found among people with Down syndrome.…”

Section: Contextmentioning

confidence: 99%

Mortality Among Adults With Intellectual Disability in England: Comparisons With the General Population

Hosking¹,

Carey²,

Shah³

et al. 2016

Am J Public Health

203

175

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Objectives. To describe mortality among adults with intellectual disability in England in comparison with the general population.Methods. We conducted a cohort study from 2009 to 2013 using data from 343 general practices. Adults with intellectual disability (n = 16 666; 656 deaths) were compared with age-, gender-, and practice-matched controls (n = 113 562; 1358 deaths).Results. Adults with intellectual disability had higher mortality rates than controls (hazard ratio [HR] = 3.6; 95% confidence interval [CI] = 3.3, 3.9). This risk remained high after adjustment for comorbidity, smoking, and deprivation (HR = 3.1; 95% CI = 2.7, 3.4); it was even higher among adults with intellectual disability and Down syndrome or epilepsy. A total of 37.0% of all deaths among adults with intellectual disability were classified as being amenable to health care intervention, compared with 22.5% in the general population (HR = 5.9; 95% CI = 5.1, 6.8).Conclusions. Mortality among adults with intellectual disability is markedly elevated in comparison with the general population, with more than a third of deaths potentially amenable to health care interventions. This mortality disparity suggests the need to improve access to, and quality of, health care among people with intellectual disability. (Am J Public Health.

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Section: Contextmentioning

confidence: 99%

Mortality Among Adults With Intellectual Disability in England: Comparisons With the General Population

Hosking¹,

Carey²,

Shah³

et al. 2016

Am J Public Health

203

175

View full text Add to dashboard Cite

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“…133,134 A Swedish study 135 of 1478 people with ID found associations between epilepsy and mortality between 1987 and 1992, with an estimated SMR of 5.0 for those with epilepsy compared with 1.6 for those without epilepsy. This compares with the HRs we found of 6.0 and 3.2 before adjusting for mortality (see Table 23).…”

Section: Mortalitymentioning

confidence: 99%

An evaluation of the effectiveness of annual health checks and quality of health care for adults with intellectual disability: an observational study using a primary care database

Carey

Hosking

Harris

et al. 2017

Health Serv Deliv Res

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Background People with intellectual disability (ID) have poorer health than the general population; however, there is a lack of comprehensive national data describing their health-care needs and utilisation. Annual health checks for adults with ID have been incentivised through primary care since 2009, but only half of those eligible for such a health check receive one. It is unclear what impact health checks have had on important health outcomes, such as emergency hospitalisation. Objectives To evaluate whether or not annual health checks for adults with ID have reduced emergency hospitalisation, and to describe health, health care and mortality for adults with ID. Design A retrospective matched cohort study using primary care data linked to national hospital admissions and mortality data sets. Setting A total of 451 English general practices contributing data to Clinical Practice Research Datalink (CPRD). Participants A total of 21,859 adults with ID compared with 152,846 age-, gender- and practice-matched controls without ID registered during 2009–13. Interventions None. Main outcome measures Emergency hospital admissions. Other outcomes – preventable admissions for ambulatory care sensitive conditions, and mortality. Data sources CPRD, Hospital Episodes Statistics and Office for National Statistics. Results Compared with the general population, adults with ID had higher levels of recorded comorbidity and were more likely to consult in primary care. However, they were less likely to have long doctor consultations, and had lower continuity of care. They had higher mortality rates [hazard ratio (HR) 3.6, 95% confidence interval (CI) 3.3 to 3.9], with 37.0% of deaths classified as being amenable to health-care intervention (HR 5.9, 95% CI 5.1 to 6.8). They were more likely to have emergency hospital admissions [incidence rate ratio (IRR) 2.82, 95% CI 2.66 to 2.98], with 33.7% deemed preventable compared with 17.3% in controls (IRR 5.62, 95% CI 5.14 to 6.13). Health checks for adults with ID had no effect on overall emergency admissions compared with controls (IRR 0.96, 95% CI 0.87 to 1.07), although there was a relative reduction in emergency admissions for ambulatory care-sensitive conditions (IRR 0.82, 95% CI 0.69 to 0.99). Practices with high health check participation also showed a relative fall in preventable emergency admissions for their patients with ID, compared with practices with minimal participation (IRR 0.73, 95% CI 0.57 to 0.95). There were large variations in the health check-related content that was recorded on electronic records. Limitations Patients with milder ID not known to health services were not identified. We could not comment on the quality of health checks. Conclusions Compared with the general population, adults with ID have more chronic diseases and greater primary and secondary care utilisation. With more than one-third of deaths potentially amenable to health-care interventions, improvements in access to, and quality of, health care are required. In primary care, better continuity of care and longer appointment times are important examples that we identified. Although annual health checks can also improve access, not every eligible adult with ID receives one, and health check content varies by practice. Health checks had no impact on overall emergency admissions, but they appeared influential in reducing preventable emergency admissions. Future work No formal cost-effectiveness analysis of annual health checks was performed, but this could be attempted in relation to our estimates of a reduction in preventable emergency admissions. Funding The National Institute for Health Research Health Services and Delivery Research programme.

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“…Additional risk factors include a history of nocturnal seizures as well as nonmodifiable factors such as earlier-onset epilepsy, male gender, and neurological comorbidities. 17,23,24 There has not been a systematic study of risk factors for SUDEP specific to children. The search for potential SUDEP biomarkers has identified associations with prolonged postictal electroencephalographic suppression and cardiac and respiratory abnormalities in the postictal period.…”

Section: How Common Is Death In Pediatric Epilepsy?mentioning

confidence: 99%

Understanding Death in Children With Epilepsy

Donner

Camfield

Brooks

et al. 2017

Pediatric Neurology

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Death in children with epilepsy is profoundly disturbing, with lasting effects on the family, community, and health care providers. The overall risk of death for children with epilepsy is about ten times that of the general population. However, the risk of premature death for children without associated neurological comorbidities is similar to that of the general population, and most deaths are related to the cause of the epilepsy or associated neurological disability, not seizures. The most common cause of seizure-related death in children with epilepsy is sudden unexpected death in epilepsy (SUDEP). SUDEP is relatively uncommon in childhood, but the risk increases if epilepsy persists into adulthood. Although the direct cause of SUDEP remains unknown, most often death follows a generalized convulsive seizure and the risk of SUDEP is strongly related to drug-resistant epilepsy and frequent generalized tonic-clonic seizures. The most effective SUDEP prevention strategy is to reduce the frequency of seizures, although a number of seizure detection devices are under development and in the future may prove to be useful for seizure detection for those at particularly high risk. There are distinct benefits for health care professionals to discuss mortality with the family soon after the diagnosis of epilepsy. An individual approach is appropriate. When a child with epilepsy dies, particularly if the death was unexpected, family grief may be profound. Physicians and other health care professionals have a critical role in supporting families that lose a child to epilepsy. This review will provide health care providers with information needed to discuss the risk of death in children with epilepsy and support families following a loss.

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Does intellectual disability increase sudden unexpected death in epilepsy (SUDEP) risk?

Abstract: Overall we found ID definitions and specified standardized mortality rates and impact of institutionalization to be quite poorly presented.

Cited by 79 publications

References 56 publications

Mortality Among Adults With Intellectual Disability in England: Comparisons With the General Population

Mortality Among Adults With Intellectual Disability in England: Comparisons With the General Population

An evaluation of the effectiveness of annual health checks and quality of health care for adults with intellectual disability: an observational study using a primary care database

Understanding Death in Children With Epilepsy

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