Mortality from sudden unexpected death in epilepsy (<scp>SUDEP</scp>) in a cohort of adults with intellectual disability

Kiani, Reza; Tyrer, Freya; Jesu, Amala Jovia Maria; Bhaumik, Sabyasachi; Gangavati, Shweta; Walker, G. S.; Kazmi, Syed Mohammad Ali; Barrett, Mary Jo

doi:10.1111/jir.12047

Cited by 49 publications

(38 citation statements)

References 48 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

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“…This compares with the HRs we found of 6.0 and 3.2 before adjusting for mortality (see Table 23). In the Leicestershire study, 133 elevated SMRs for adults with ID with epilepsy were seen in both men (SMR 3.2) and women (SMR 5.6), with both rising dramatically when the outcome was restricted to SUDEP, identified from case notes and post-mortem reports. In Ontario, elevated mortality with epilepsy for people with ID compared with that for those without epilepsy was about 1.8 times higher for ages 20-60 years, 125 compared with our estimate of 1.6-1.7 (see Table 24).…”

Section: Mortalitymentioning

confidence: 99%

“…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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“…16,23,[25][26][27][28][29][30][31][32]56 The remit of comment and investigation of SMR of risk factors of these 10 studies was ambiguous and diverse. Some articles commented on epilepsy SMR in people without ID and some reported on epilepsy SMR in the background of ID or CP or neurological damages.…”

Section: Resultsmentioning

confidence: 95%

“…The two major epilepsy related causes of death in ID are, sudden unexpected death in epilepsy (SUDEP) and status epilepticus are significantly over represented in this population. 16 With regard to SUDEP and ID, Tellez-Zenteno et al in their systematic review found the risk to be 3.4 times higher than the general population with epilepsy. 17 Walczak et al in their cohort study identified a 5 times higher risk of SUDEP, with ID being an independent risk factor.…”

Section: Introductionmentioning

confidence: 97%

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

Young

Shankar

Palmer

et al. 2015

Seizure

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Mortality from sudden unexpected death in epilepsy (SUDEP) in a cohort of adults with intellectual disability

Abstract: The authors believe that a comprehensive risk management under a multiagency/multidisciplinary framework should be undertaken for all adults with ID and epilepsy in day-to-day clinical practice to reduce mortality in people with ID.

Cited by 49 publications

References 48 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

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

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