Cancer‐related mortality among people with intellectual disabilities: A nationwide population‐based cohort study

Abstract

BACKGROUND:Concerns have been raised about access to cancer screening and the timely receipt of cancer care for people with an intellectual disability (ID). However, knowledge about cancer mortality as a potential consequence of these disparities is still limited. This study, therefore, compared cancer-related mortality patterns between people with and without ID. METHODS: A historical cohort study (2015-2019) linked the Dutch adult population (approximately 12 million people with an ID prevalence of 1.45%) and mortality registries. Cancer-related mortality was identified by the underlying cause of death (according to the chapter on neoplasms in the International Classification of Diseases, Tenth Revision). Observed mortality and calculated age-and sex-standardized mortality ratios (SMRs) with 95% confidence intervals (CIs) were reported. RESULTS: There were 11,102 deaths in the ID population (21.7% cancer-related; n = 2408) and 730,405 deaths in the general population (31.2%; n = 228,120) available for analysis. Cancer was noted as the cause of death more often among people with ID in comparison with the general population (SMR, 1.48; 95% CI, 1.42-1.54), particularly in the young age groups. High-mortality cancers included cancers within the national screening program (SMRs,, digestive cancers (SMRs, 1.24-2.56), bladder cancer (SMR, 2.07; 95% CI, 1.61-2.54), and cancers of unknown primary (SMR, 2.48; 95% CI, 2.06-2.89). CONCLUSIONS: Cancer was reported as the cause of death approximately 1.5 times more often in people with ID compared with the general population. This mortality disparity may indicate adverse effects from inequalities in screening and cancer care experienced by people with ID.

Do people with disabilities experience disparities in cancer care? A systematic review

“…(61,63) This finding suggests that differences in frequency of appropriate treatment appear to explain the higher cancer-specific mortality for this vulnerable population, with higher mortality likely due to loss of chance and unequal clinical care. People with disabilities were also more likely to face diagnosis and treatment delays (22,45,46,55,56,71) -but not when access to screening was optimal, (38) underlining the importance of good screening access. People with disabilities were also less likely to receive curative-intent transplants for blood cancers (19,65), and more likely to receive inappropriate radical mastectomy instead of guideline-consistent minimally invasive procedures for breast cancer.…”

“…Over a third of the eligible studies focused on people with psychosocial disability (42%, n=13) defined as a previous diagnosis of psychiatric or mental health issues. (38,39,41,(44)(45)(46)(47)(48)(49)(50)(51)(52)(53) Nine studies (29%, n=9) focused on intellectual, learning disabilities, cognitive impairment or dementia (40,42,(54)(55)(56)(57)(58)(59)(60). Nine other studies (29%, n=9) considered all disability in general or grouped into subcategories (e.g.…”

Disparities in All-Cause Mortality in Older Patients with Colorectal Cancer According to Disability Status: A Nationwide Analysis

“…For instance, a study regarding Medicare beneficiaries in the United States concluded that disabled beneficiaries diagnosed with breast cancer and CRC had higher overall and cancer-specific mortality. A study of the Dutch adult population also found that cancer-related mortality was more common in individuals with intellectual disability [ 10 ]. Likewise, a previous study in Korea reported that cancer patients with disabilities had higher long-term all-cause mortality, and that such propensities also tended to persist in 5-year cancer survivors, suggesting the need for further collaborative efforts to improve the survival of cancer patients and survivors [ 23 ].…”

“…The number of people with disabilities has also increased in Korea from approximately 2.1 million in 2005 to 2.7 million in 2017 [ 8 ]. Investigating mortality in cancer patients with disability is important because cancer is usually detected at a later stage in such populations and patients show poorer survival [ 9 , 10 ]. Individuals with disabilities are known to experience various barriers, including physical and communicational constraints, in accessing and utilizing healthcare [ 11 , 12 , 13 ].…”

All-cause and cause-specific mortality among people with and without intellectual disabilities during the COVID-19 pandemic in the Netherlands: a population-based cohort study

“…This method has been applied to other studies related to health and intellectual disability before, including investigation of mortality. 16 , 30 All individuals without indicators of intellectual disability were analysed as members of the general population.…”