Cancer treatment and decision making in individuals with intellectual disabilities: a scoping literature review

Boonman, Anne J; Cuypers, Maarten; Leusink, Geraline L; Naaldenberg, Jenneken; Bloemendal, Haiko J.

doi:10.1016/s1470-2045(21)00694-x

Cited by 21 publications

(14 citation statements)

References 64 publications

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“…5 Several recent literature reviews on cancer outcomes for people with IDD identified delayed diagnoses as a potential contributing factor to greater observed cancer mortality, alongside knowledge gaps in understanding cancer stage at diagnosis for people with IDD. [6][7][8][9] Characteristics of IDD diagnoses and how health and social systems interact with individuals with IDD may lead to delayed cancer diagnoses and advanced cancer stage at diagnosis for people with IDD. [10][11][12] Individuals with IDD may experience limitations in their verbal communication, perception, and processing of new information and problem solving, which can lead to difficulties in recognizing and communicating cancer-related signs and symptoms.…”

Section: Introductionmentioning

confidence: 99%

Stage IV breast, colorectal, and lung cancer at diagnosis in adults living with intellectual or developmental disabilities: A population‐based cross‐sectional study

Mahar,

Biggs,

Hansford

et al. 2023

Cancer

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BackgroundCancer is a leading cause of death among people living with intellectual or developmental disabilities (IDD). Although studies have documented lower cancer screening rates, there is limited epidemiological evidence quantifying potential diagnostic delays. This study explores the risk of metastatic cancer stage for people with IDD compared to those without IDD among breast (female), colorectal, and lung cancer patients in Canada.MethodsSeparate population‐based cross‐sectional studies were conducted in Ontario and Manitoba by linking routinely collected data. Breast (female), colorectal, and lung cancer patients were included (Manitoba: 2004–2017; Ontario: 2007–2019). IDD status was identified using established administrative algorithms. Modified Poisson regression with robust error variance models estimated associations between IDD status and the likelihood of being diagnosed with metastatic cancer. Adjusted relative risks were pooled between provinces using random‐effects meta‐analyses. Potential effect modification was considered.ResultsThe final cohorts included 115,456, 89,815, and 101,811 breast (female), colorectal, and lung cancer patients, respectively. Breast (female) and colorectal cancer patients with IDD were 1.60 and 1.44 times more likely to have metastatic cancer (stage IV) at diagnosis compared to those without IDD (relative risk [RR], 1.60; 95% confidence interval [CI], 1.16–2.20; RR, 1.44; 95% CI, 1.24–1.67). This increased risk was not observed in lung cancer. Significant effect modification was not observed.ConclusionsPeople with IDD were more likely to have stage IV breast and colorectal cancer identified at diagnosis compared to those without IDD. Identifying factors and processes contributing to stage disparities such as lower screening rates and developing strategies to address diagnostic delays is critical.

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Section: Introductionmentioning

confidence: 99%

Stage IV breast, colorectal, and lung cancer at diagnosis in adults living with intellectual or developmental disabilities: A population‐based cross‐sectional study

Mahar,

Biggs,

Hansford

et al. 2023

Cancer

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“…In our review, compared to people without disabilities, people with disabilities were found to have worse survival, higher overall and cancer-specific mortality, loss of chance for access to state-of-the-art care or curative-intent therapies, treatment delays, undertreatment or excessively invasive treatment, worse access to inhospital services, less specialist healthcare utilization, more difficult access to pain medications and inadequate end-of-life quality of care. Even if sometimes treatment decisions for people with disabilities can be clinically complex, such as the abovementioned case of cognitive impairment with legal consent or non-compliance issues, or when confronted with a disability-related shortened life expectancy or frailty for some syndromes (25), there is no plausible medical justification for such a wide disparity compared to patients without disabilities, and these results raise severe concerns about equality in cancer care. (74) The results of this study are consistent with those of other recent literature reviews (12,24,25,73), showing that people with disabilities experience inequities at several points throughout the cancer care pathway.…”

Section: Discussionmentioning

confidence: 99%

“…Even if sometimes treatment decisions for people with disabilities can be clinically complex, such as the abovementioned case of cognitive impairment with legal consent or non-compliance issues, or when confronted with a disability-related shortened life expectancy or frailty for some syndromes (25), there is no plausible medical justification for such a wide disparity compared to patients without disabilities, and these results raise severe concerns about equality in cancer care. (74) The results of this study are consistent with those of other recent literature reviews (12,24,25,73), showing that people with disabilities experience inequities at several points throughout the cancer care pathway. Screening disparities have been known…”

Section: Discussionmentioning

confidence: 99%

“…Furthermore, several studies suggest that cancer may be diagnosed at a later stage in patients with disabilities, and that they experience treatment disparities resulting in higher cancer-specific mortality rates. (24) Two recent scoping reviews found that patients with intellectual disabilities may be at risk of experiencing inequities at various points during cancer clinical pathways, (24) (25) but this issue has not been reviewed for people with disabilities more generally.…”

Section: (Which Was Not Certified By Peer Review)mentioning

confidence: 99%

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

Tosetti

Kuper

2023

Preprint

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Background: Over 1.3 billion people, or 16% of the world's population, live with some form of disability. Recent studies have reported that patients with disabilities might not be receiving state-of-the-art treatment for cancer as their non-disabled peers; our objective was to systematically review this topic. Methods: A systematic review was undertaken to compare cancer outcomes and quality of cancer care between adults with and without disabilities (NIHR Prospero register ID number: CRD42022281506). A search of the literature was performed in July 2022 across five databases: EMBASE, Medline, Cochrane Library, Web of Science and CINAHL databases. Peer-reviewed quantitative research articles, published in English from 2000 to 2022, with interventional or observational study designs, comparing cancer outcomes between a sample of patients with disabilities and a sample without disabilities were included. Studies were evaluated for risk of bias based on a set of criteria according to the SIGN 50 guidelines. A narrative synthesis was conducted according to the Cochrane SWiM guidelines, with tables summarizing study characteristics and outcomes. This research received no external funding. Results: Thirty-one studies were included in the systematic review. Compared to people without disabilities, people with disabilities had worse cancer outcomes, in terms of poorer survival and higher overall and cancer-specific mortality. There was also evidence that people with disabilities received poorer quality cancer care, including: lower access to state-of-the-art care or curative-intent therapies, treatment delays, undertreatment or excessively invasive treatment, worse access to in-hospital services, less specialist healthcare utilization, less access to pain medications and inadequate end-of-life quality of care. Discussion: Limitations of this work include results from high-income countries only, exclusion of qualitative research, no meta-analysis and high risk of bias in 15% of included studies. In spite of these limitations, our results show that people with disabilities often experience severe disparities in cancer care: barriers at different levels must be eliminated to ensure that they receive equitable treatment.

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“…Such concerns are further compounded by findings in a recent review that upon diagnosis people with IDD receive less intensive cancer treatment than is generally administered to other populations. 18 This is an additional inequity. The principles for treating cancer should be the same for people with IDD as the general population and they should receive the most effective care and treatment.…”

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confidence: 99%

An invisible population: Late‐stage cancer diagnosis for people with intellectual or developmental disability

McMahon,

McCallion,

McCarron

2023

Cancer

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Cancer treatment and decision making in individuals with intellectual disabilities: a scoping literature review

Cited by 21 publications

References 64 publications

Stage IV breast, colorectal, and lung cancer at diagnosis in adults living with intellectual or developmental disabilities: A population‐based cross‐sectional study

Stage IV breast, colorectal, and lung cancer at diagnosis in adults living with intellectual or developmental disabilities: A population‐based cross‐sectional study

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

An invisible population: Late‐stage cancer diagnosis for people with intellectual or developmental disability

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