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Association of Intellectual Disability with All-Cause and Cause-Specific Mortality in Sweden

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posted on 2021-07-27, 06:20 authored by T Hirvikoski, M Boman, Carl TidemanCarl Tideman, P Lichtenstein, A Butwicka
Importance: Knowledge of the health challenges and mortality in people with intellectual disability (ID) should guide health policies and practices in contemporary society. Objective: To examine premature mortality in individuals with ID. Design, Setting, and Participants: This population-based longitudinal cohort study obtained data from several national health care, education, and population registers in Sweden. Two registers were used to identify individuals with ID: the National Patient Register and the Halmstad University Register on Pupils With Intellectual Disability. Two cohorts were created: cohort 1 comprised young adults (born between 1980 and 1991) with mild ID, and cohort 2 comprised individuals (born between 1932 and 2013) with mild ID or moderate to profound ID; each cohort had matched reference cohorts. Data analyses were conducted between June 1, 2020, and March 31, 2021. Exposures: Mild or moderate to profound ID. Main Outcomes and Measures: The primary outcome was overall (all-cause) mortality, and the secondary outcomes were cause-specific mortality and potentially avoidable mortality. Results: Cohort 1 included 13 541 young adults with mild ID (mean [SD] age at death, 24.53 [3.66] years; 7826 men [57.8%]), and its matched reference cohort consisted of 135410 individuals. Cohort 2 included 24059 individuals with mild ID (mean [SD] age at death, 52.01 [16.88] years; 13649 male individuals [56.7%]) and 26602 individuals with moderate to profound ID (mean [SD] age at death, 42.16 [21.68] years; 15338 male individuals [57.7%]); its matched reference cohorts consisted of 240590 individuals with mild ID and 266020 with moderate to profound ID. Young adults with mild ID had increased overall mortality risk compared with the matched reference cohort (odds ratio [OR], 2.86; 95% CI, 2.33-3.50), specifically excess mortality in neoplasms (OR, 3.58; 95% CI, 2.02-6.35), diseases of the nervous system (OR, 40.00; 95% CI, 18.43-86.80) and circulatory system (OR, 9.24; 95% CI, 4.76-17.95). Among deaths that were amenable to health care (OR, 7.75; 95% CI, 4.85-12.39), 55% were attributed to epilepsy. In cohort 2, increased risk of overall mortality was observed among both individuals with mild ID (OR, 6.21; 95% CI, 5.79-6.66) and moderate to profound ID (OR, 13.15; 95% CI, 12.52-13.81) compared with the matched reference cohorts. Those with moderate to profound ID had a higher risk in several cause-of-death categories compared with those with mild ID or the matched reference cohort. Adjustment for epilepsy and congenital malformations attenuated the associations. The relative risk of premature death was higher in women (OR, 6.23; 95% CI, 4.42-8.79) than in men (OR, 1.99; 95% CI, 1.53-2.60), but the absolute risk of mortality was similar (0.9% for women vs 0.9% for men). Conclusions and Relevance: This study found excess premature mortality and high risk of deaths with causes that were potentially amenable to health care intervention among people with ID. This finding suggests that this patient population faces persistent health challenges and inequality in health care encounters..


This study was supported by grant 2018-01789 from the Swedish Research Council for Health, Working Life and Welfare (principal investigator: Tideman). Dr Butwicka was supported by grant 2017-00788 from the Swedish Research Council; clinical research appointment 20180718 from Stockholm County Council; and Strategic Research Programme in Neuroscience (StratNeuro), Karolinska Institutet. Dr Lichtenstein was supported by project 2012-1678 from the Swedish Research Council for Health, Working Life and Welfare and by grant 201601989 from the Swedish Research Council.


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JAMA Network Open





Article Number

ARTN e2113014







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