Mortality patterns and risk among older men and women with intellectual disability: a Swedish national retrospective cohort study

Abstract

Background: Sweden has closed all institutions and imposed legislation to ensure service and support for individuals with intellectual disability (ID). Understanding mortality among older individuals with ID is essential to inform development of health promotion and disease control strategies. We investigated patterns and risk of mortality among older adults with ID in Sweden.Methods: This retrospective cohort study compared older adults aged 55 years and older with ID with a control population. Participants were followed during 2002-2015 or death, and censored if they moved out of Sweden. Individuals with ID were identified from two national registers: one covering all specialist health-care visits (out-patient visits and hospitalisation) and the other covering people accessing social/support services. Individuals with ID (n = 15,289) were matched with a control population by sex, birth year, and year of first hospitalisation/out-patient visit/access to LSS services. Cause-of-death data were recorded using International Classification of Diseases, Tenth Revision. Cox proportional hazards regression were conducted to assess if overall and cause-specific mortality rate among individuals with ID was higher than in the Swedish population. Results: The overall mortality rate among individuals with ID was 2483 per 100,000 people compared with 810 in the control population. Among those who died, more individuals with ID were younger than 75 years and unmarried. Leading causes of death among individuals with ID were circulatory diseases (34%), respiratory diseases (17%) and neoplasms (15%). Leading causes of death in a sub-sample with Down syndrome (DS) were respiratory diseases (37%), circulatory diseases (26%) and mental/behavioural disorders (11%). Epilepsy and pneumonitis were more common among individuals with ID than controls. Alzheimer's disease was common in the control population and individuals with DS, but not among those with ID when DS was excluded. Individuals with ID had a higher overall mortality risk (hazard ratio [HR] 4.1, 95% confidence interval [CI] 4.0-4.3) and respiratory disease death risk (HR 12.5, 95% CI 10.9-14.2) than controls. Conclusion: Older adults with ID in Sweden carry a higher mortality risk compared with the general population, mainly attributable to respiratory, nervous and circulatory diseases. Care for this group, particularly during the terminal stage of illness, needs to be tailored based on understanding of their main health problem.

Hospital readmissions among older people with intellectual disability in comparison with the general population

“…Nor can it be explained by the selection of living people into the ID cohort, as it is not a major cause of death in this group (Ng et al . ). A possible explanation could be that for people living in service homes, instructions on how to avoid future infectious diseases are given not only to the person him/herself but also to the service home staff, thus decreasing the risk for readmissions.…”

“…They are also a common cause of death in this population (Ng et al . ; Oppewal et al . ; Stankiewicz et al .…”

“…Circulatory diseases are the leading cause of death among people with ID (Ng et al . ), and including only people still living may cause failure to identify frequent readmissions prior to death or even that readmissions do not occur due to deaths. This topic needs to be further investigated, for example, by examining readmissions prior to death.…”

Disparities in cancer‐related healthcare among people with intellectual disabilities: A population‐based cohort study with health insurance claims data

“…6,7 Concerns about the accessibility and quality of cancer-related care for people with ID have been substantiated by studies indicating lower participation rates in cancer screening, detection of cancer at higher tumor stages, different distribution patterns across affected organs, and cancer-related mortality at a younger age compared to non-ID reference groups. [8][9][10][11][12][13][14][15] However, as these studies addressed only particular aspects of cancer control or related care, insight into the actual and recent cancer incidence within the ID population at large and the utilization of cancer-related healthcare is still limited. 16,17 Quantification of the cancer burden in the ID population is challenged by two main issues: (a) studies often focus on small subgroups (e.g.…”

“…people with a particular syndrome such as Down syndrome), and, consequently, these studies cannot be generalized to the population of everyone with ID; (b) there are, for a series of reasons, only a few countries with functional registers of people with ID. 13,18 People with ID are, therefore, difficult to identify in population-based data, and they are often excluded in health surveys. 2,3,[19][20][21][22][23] Consequently, many studies have had to rely on convenience sampling, which may have resulted in biased outcomes, and other studies contained such small samples that they would have had insufficient power to detect statistically significant differences between ID subgroups and the general population.…”