Clinical Predictors of Mortality in Adults with Intellectual Disabilities with and without Down Syndrome

Abstract

Background. Mood, baseline functioning, and cognitive abilities as well as psychotropic medications may contribute to mortality in adults with and without Down Syndrome (DS). Methods. Population-based (nonclinical), community-dwelling adults with intellectual disabilities (IDs) were recruited between 1995 and 2000, assessed individually for 1–4 times, and then followed by yearly phone calls. Results. 360 participants (116 with DS and 244 without DS) were followed for an average of 12.9 years (range 0–16.1 years as of July 2011). 108 people died during the course of the followup, 65 males (31.9% of all male participants) and 43 females (27.6% of all female participants). Cox proportional hazards modeling showed that baseline practical skills, seizures, anticonvulsant use, depressive symptoms, and cognitive decline over the first six years all significantly contributed to mortality, as did a diagnosis of DS, male gender, and higher age at study entry. Analysis stratified by DS showed interesting differences in mortality predictors. Conclusion. Although adults with DS have had considerable improvements in life expectancy over time, they are still disadvantaged compared to adults with ID without DS. Recognition of potentially modifiable factors such as depression may decrease this risk.

Mortality Rates in the General Irish Population Compared to those with an Intellectual Disability from 2003 to 2012

“…; Thorpe et al . ), findings here also support differential rates of mortality across levels of intellectual disability with highest mortality found among those with a profound level of intellectual disability and the lowest among those with a mild intellectual disability. However, there has been no increased longevity among people with intellectual disability over the 10‐year period.…”

“…Thorpe et al . () in a more recent population‐based study followed 360 community‐dwelling adults with intellectual disability over a 13‐year period and for the 108 people who died reported a mean age at death of 59 years with longevity slightly higher in males at 60 years versus 59 years for females. Seizures, anticonvulsant use, depressive symptoms and cognitive decline over the first six years all significantly contributed to mortality, as did a diagnosis of Down syndrome (DS), male gender and age.…”

Behavior and Adaptive Functioning in Adolescents With Down Syndrome: Specifying Targets for Intervention

“…This is an important finding, given that research in adults with Down syndrome and in the broader population of adults with intellectual disability has generally focused on the association between affective problems and functional abilities (e.g. Esbensen & Benson, 2006, Walker, Dosen, Buitelaar, & Janzing, 2011; Thorpe, Pahwa, Bennett, Kirk, & Nanson, 2012). …”

Children With Intellectual Disability and Hospice Utilization

“…Our finding is consistent with the adult ID literature that reported comorbidities increase the risk of mortality among people with ID. 6,8 Subsequently, the severity of their health condition may facilitate hospice enrollment. Children with ID often suffer disproportionately high rates of complex chronic conditions including coronary heart disease, respiratory disease, and cancer.…”

“…4,5 Survival is further reduced when children with ID suffer from significant motor dysfunction (e.g., epilepsy), progressive congenital conditions (e.g., Down Syndrome), and comorbidities. 6–8 …”