Heterogeneity in age at death for adults with developmental disability

Abstract

Background Although increased attention has been devoted to mortality trends for adults with developmental disability, research has not accounted for possible differences in age at death between disability types. We examine whether heterogeneity is present in age at death between adults with different types of developmental disability. Methods Data were from the 2012–2016 U.S. Multiple Cause‐of‐Death Mortality files. Mean age at death and age at death distributions were analysed for adults, aged 18–126, with and without developmental disability collectively and then stratified by biological sex. Results There were 33 154 decedents with and 13 026 759 without developmental disability. Compared with adults without developmental disability, age at death was lower for all decedents with developmental disability but varied markedly by disability type and biological sex. Among adults with developmental disability, those with intellectual disability had the highest age at death, and those with cerebral palsy or other rare developmental disabilities, especially if co‐morbid for a second developmental disability, had the lowest age at death. Conclusion Research on age at death for adults with developmental disability must account for heterogeneity among disability types in order to ensure reliable estimates. Failure to do so conceals important differences between disability types, which can misguide public health and preventive care efforts to reduce premature mortality and/or provide aging‐related supports.

Cause of death in adults with intellectual disability in the United States

“…Prior research reveals substantial heterogeneity in age at death patterns between adults with and without various types of intellectual and developmental disabilities, with adults with ID, on average, living longer than their peers with other types of developmental disability such as cerebral palsy or Down syndrome, or peers with comorbid developmental disabilities, such as ID and cerebral palsy (Landes et al . 2019a). Thus, we focus in this paper on the 22 512 adults, aged 18 and over at the time of death, with an ID (ICD‐10 codes F70–79) indicated on their death certificate who did not have a comorbid developmental disability (cerebral palsy, Down syndrome and other rare developmental disabilities) also indicated, and the 32 738 229 adults without an ID indicated on their death certificate.…”

“…These improvements resulted in a larger percentage of adults with ID who do not have a comorbid developmental disability (e.g. cerebral palsy) now living into their early 60s (Landes et al 2019a). Despite this definite progress, adults with ID in the United States who do not have a comorbid developmental disability, on average, still die at ages 10-15 years earlier than adults in the general population (Landes et al 2019a).…”

“…cerebral palsy) now living into their early 60s (Landes et al 2019a). Despite this definite progress, adults with ID in the United States who do not have a comorbid developmental disability, on average, still die at ages 10-15 years earlier than adults in the general population (Landes et al 2019a). This mortality disadvantage is substantially more pronounced than the age at death gap in the United States between men and women (6.4 years), and White and Black Americans (7.3 years) (National Vital Statistics System 2017).…”

“…We address these limitations by providing updated analysis on mortality trends among US adults with ID. Our focus is on adults with ID who do not have a comorbid developmental disability, such as Down syndrome or cerebral palsy, as this population lives comparatively longer lives than their peers with a comorbid developmental disability (Landes et al 2019a). To increase the specificity of comparative analysis, we utilised a standardised list of the leading causes of death in the general population supplemented with causes that are more prevalent among adults with ID and analyse causes of death by ID severity classification, overall and across age groups.…”

Evidence of continued reduction in the age‐at‐death disparity between adults with and without intellectual and/or developmental disabilities

“…From the 1980 s to the 1990 s, age at death for people with intellectual and/or developmental disabilities increased from the late 50 s to the mid‐60 s (Boyle et al, 2011; Lauer et al, 2015). Yet, evidence from the US demonstrates that the age‐at‐death disparity remains substantial, with variation by type of disability: intellectual disability – 13 years; Down syndrome – 19 years; cerebral palsy or rare developmental disabilities – 24 to 25 years (Landes et al, 2019a). This striking mortality disadvantage is substantially larger than the age‐at‐death gap between men and women (6.4 years), and White and Black individuals living in the US (7.3 years) (National Vital Statistics System, 2017).…”