Mortality in people with intellectual disabilities in England

Abstract

National data about mortality in people with ID provides a basis for public health interventions. Linked data using GP records to identify people with ID could provide comprehensive population-based monitoring in England, unbiased by the circumstances of illnesses or death; to date information governance constraints have prevented this. However, GPs in England currently identify only around 0.5% of the population as having ID, suggesting that individuals with mild, non-syndromic ID are largely missed. Notably common causes of death suggest control of cardiovascular risk factors, epilepsy and dysphagia, management of thrombotic risks and colorectal screening are important areas for health promotion initiatives.

Early death and causes of death of people with intellectual disabilities: A systematic review

“…Cancer was another leading underlying cause of death in studies that comprised children and adults with intellectual disabilities (Forsgren et al., ; Glover et al., ; Heslop et al., ; Hosking et al., ), and studies that comprised adults only (Hosking et al., ; Tyrer & McGrother, ).…”

“…Other underlying causes of death that were more common amongst the population with intellectual disabilities included congenital malformations, gastrointestinal and neurological disorders. Congenital malformations were 46–86 times more common as an underlying cause of death in the population with intellectual disabilities compared to the general population (Forsgren et al., ; Glover et al., ; Tyrer & McGrother, ). Durvasula et al.…”

Colorectal Cancer in People with Intellectual Disabilities

“…Of these, 4 were colorectal cancers. Another UK-based study examined cancer mortality records for PWIDs between April 2010 and March 2014 [8]. Of the 664 deaths (371 male, 293 female) 13% (n = 87) of mortalities were cancer related, with cancer of the digestive tract being the largest subgroup identified (32 of the 87 observed deaths).…”

“…Evidence on overall cancer incidence in PWIDs is limited due to the lack of reliable epidemiological data [4] but is currently estimated to be as frequent as in the general population [5,6]. On the other hand, the pattern of cancer in PWIDs differs from that of the general population and suggests a higher risk for gastrointestinal cancers [5,7,8]. Colorectal cancer is 1 of the 4 most common cancers in the world [9].…”

People with intellectual disabilities at the end of their lives: The case for specialist care?

“…People with intellectual disabilities (ID) generally die earlier than those without intellectual disabilities (Public Health England, ; Glover, Williams, Heslop et al, ). Healthcare improvements, however, mean that individuals with intellectual disabilities, and in particular, those with mild intellectual disabilities and Down syndrome are now living closer to the ages of those in the general population (Emerson & Hatton, ; Tuffrey‐Wijne, McLaughlin, Curfs et al., 2016; World Health Organisation, ).…”