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

Cuypers, Maarten; Tobi, Hilde; Huijsmans, Cornelis A A; Gerwen, Lieke van; Hove, Michiel ten; Weel, Chris van; Kiemeney, Lambertus A.; Naaldenberg, Jenneken; Leusink, Geraline L

doi:10.1002/cam4.3333

Cited by 35 publications

(31 citation statements)

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“…The high risk of amenable mortality may be associated with both environmental factors (eg, accessibility of high-quality health care and reliance on social networks) and ID-related difficulties during health encounters. Health advocacy programs for individuals with ID may support their comprehension and communication, improve documentation of health encounters and use of preventive health screening programs 35 , 38 and primary care, 39 , 40 and promote active participation in health encounters. Heavy reliance on family members for both advocacy and care is common, 35 , 41 but health care encounters must address family needs in addition to assessing and making reasonable adjustments to the needs of the individual with ID.…”

Section: Discussionmentioning

confidence: 99%

Association of Intellectual Disability With All-Cause and Cause-Specific Mortality in Sweden

et al. 2021

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Section: Discussionmentioning

confidence: 99%

Association of Intellectual Disability With All-Cause and Cause-Specific Mortality in Sweden

et al. 2021

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“…In a small study of 11 women with intellectual disabilities who had breast cancer, Satgé et al ,11 observed that cancers were found at a more advanced stage than in the general population. More recently, a population-based cohort study in the Netherlands concluded that cancer may be underdiagnosed and/or undertreated in people with intellectual disability 12. A scoping review of cancer treatment and survivorship among people with intellectual and developmental disabilities in the USA reported that urgent action was needed to improve collaboration among healthcare providers 13…”

Section: Introductionmentioning

confidence: 99%

Cancer in deceased adults with intellectual disabilities: English population-based study using linked data from three sources

et al. 2022

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ObjectiveTo improve our understanding of cancer in adults with intellectual disabilities.DesignPopulation-based study using linked data about deceased adults from the Learning (Intellectual) Disabilities Mortality Review (LeDeR) programme, the national cancer registry and NHS Digital.SettingEngland.Participants1096 adults with intellectual disabilities identified by the LeDeR programme who died between 1 January 2017 and 31 December 2019.Outcome measureAny form of cancer listed as a long-term health condition by a LeDeR reviewer or 10th edition of the International Classification of Diseases codes C00–D49 included on Parts I or II of the Medical Certificate of Cause of Death.ResultsIn decedents with intellectual disabilities and cancer, more than a third (35%; n=162) had cancer diagnosed via emergency presentations. Almost half (45%; n=228) of cancers were at stage IV when diagnosed. More than a third (36%; n=309) of underlying causes of deaths were of cancers of the digestive system; almost half of these (48%; n=147) were cancer of the colon, rectum or anus. Of those who died with colorectal cancer, 43% were below the age threshold for colorectal screening.ConclusionsIn decedents with intellectual disabilities, symptoms suggestive of cancer had tended to be identified most frequently as an emergency and at a late stage. There is a need for greater awareness of symptoms of cancer in this population, a lower threshold for referral by General Practitioners (GPs), accelerated access to diagnosis and treatment and consideration paid to lowering the age for colorectal screening.

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“…4,15,16 Combined with a lower likelihood Cancer March 15, 2022 of participation in cancer screening, this raises concerns about the accessibility and effectiveness of cancer diagnostics and care for people with ID. [17][18][19][20][21] Even within health systems that strive for broad accessibility and equitable care, such disparities in cancer care can occur. 22,23 For evaluating the overall effectiveness of public health care for people with ID, mortality statistics have become an important source of information.…”

Section: Introductionmentioning

confidence: 99%

“… 4 , 15 , 16 Combined with a lower likelihood of participation in cancer screening, this raises concerns about the accessibility and effectiveness of cancer diagnostics and care for people with ID. 17 , 18 , 19 , 20 , 21 Even within health systems that strive for broad accessibility and equitable care, such disparities in cancer care can occur. 22 , 23 …”

Section: Introductionmentioning

confidence: 99%

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

Cuypers¹,

Schalk²,

Boonman³

et al. 2021

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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.

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

Cited by 35 publications

References 40 publications

Association of Intellectual Disability With All-Cause and Cause-Specific Mortality in Sweden

Association of Intellectual Disability With All-Cause and Cause-Specific Mortality in Sweden

Cancer in deceased adults with intellectual disabilities: English population-based study using linked data from three sources

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

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