The Impact of Physical, Intellectual and Social Impairments on Survival in Adults with Intellectual Disability: A Population‐Based Register Study

Abstract

Background Research into factors associated with survival in adults with intellectual disability is limited and no studies have controlled for changes in these factors over time.Material and Methods All adults aged ‡20 years with moderate to profound intellectual disability (approximate IQ < 50) using specialist services in Leicestershire and Rutland, UK, were identified. The relationship between survival and physical, intellectual and social impairments was investigated, also adjusting for age, sex, ethnicity and exact year of birth. Results Of 2453 adults studied, 402 (16%) died over a maximum follow-up period of 19 years. While physical, intellectual and social impairments were all associated with survival individually, physical impairment was the only impairment to significantly predict survival in the multi-variable analysis. Being non-mobile was associated with a sevenfold increased risk of death and being partially mobile with a twofold increased risk of death compared with being fully mobile [adjusted hazards ratios (HR) ¼ 7.14; 95% confidence interval (CI) 4.99-10.21 and HR ¼ 2.33; 95% CI 1.84-2.95]. Being male and earlier year of birth were also associated with shorter survival. Conclusions The implications of these findings are discussed.

Physical mobility limitations in adults with intellectual disabilities: a systematic review

“…However, these studies should not be considered to be independent. In addition, there were two publications that used data collected from 1987 onwards from the Leicestershire learning disabilities register (McGrother et al 1996;Tyrer et al 2007).…”

“…From the methods reported, it appeared that many of the participants from the second study were also analysed in the first one. Whereas Tyrer et al (2007) report on a larger sample using a clearer definition of mobility impairment, McGrother et al (1996) offer different comparison groups for mobility prevalence and a perspective of the effect using a different definition upon the prevalence of mobility limitations. Both of these publications are presented in the results, but again it must be recognised that they are not completely independent.…”

Cause‐specific mortality and death certificate reporting in adults with moderate to profound intellectual disability

“…Had those with mild ID been included in the numerator for this study, the reported SMRs are likely to have been lower, because the risk of premature death is greater in people at the more severe end of the ID spectrum (Patja et al. 2001; Tyrer et al. 2007b).…”

“…We have found that those with mild ID who are enrolled on the register often have significant adaptive and challenging behaviour problems that cannot be managed effectively by mainstream services and thus are referred for specialist care. Had those with mild ID been included in the numerator for this study, the reported SMRs are likely to have been lower, because the risk of premature death is greater in people at the more severe end of the ID spectrum (Patja et al 2001;Tyrer et al 2007b). Another point for consideration is that adults only were investigated in this study.…”

A Review of Health Surveillance in Older Adults with Intellectual and Developmental Disabilities

“…The prevalence reported is considered an administrative prevalence of intellectual and developmental disabilities, as only individuals receiving support from social, health, voluntary, or independent sector services are included. The identification of the entire population of persons with intellectual and developmental disabilities is not possible (Bhaumik, Tyrer, McGrother, & Ganghadaran, 2008); however, the register is estimated to capture 95% of individuals with moderate to profound disabilities (Tyrer, Smith, McGrother, & Taub, 2007).…”