Are Researchers Addressing Cancer Treatment and Survivorship Among People With Intellectual and Developmental Disabilities in the U.S.? A Scoping Review

Samtani, Grace; Bassford, Tamsen; Williamson, Heather J.; Armin, Julie

doi:10.1352/1934-9556-59.2.141

Cited by 11 publications

(4 citation statements)

References 46 publications

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“…These differences are notable considering that organized population‐based cancer screening programs exist in both provinces in our study. To the best of our knowledge, 6,7,44,45 no other studies have compared the risk of metastatic stage at diagnosis between those living with and without IDD. Our findings are consistent with case reports and case series that suggested potential delays in cancer diagnosis for people with IDD relative to those without IDD, 19–21 as well as lower rates of breast and colorectal cancer screening for individuals with IDD compared to those without IDD 17,18 .…”

Section: Discussionmentioning

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: Discussionmentioning

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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“…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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“…In addition to the development and public availability of MHMC, the study team has published 3 manuscripts covering the state of research on cancer screening and treatment for individuals with IDD and the lessons learned from our community-engaged processes [ 45 , 61 - 62 ]. A fourth manuscript sharing detailed results of community-based qualitative formative research has been published [ 50 ], and the results of feasibility and acceptability testing will also be submitted for publication.…”

Section: Discussionmentioning

confidence: 99%

An Adapted Cancer Screening Education Program for Native American Women With Intellectual and Developmental Disabilities and Their Caregivers: Protocol for Feasibility and Acceptability Testing

Armin¹,

Williamson²,

Rothers³

et al. 2023

JMIR Res Protoc

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Background Women with intellectual and developmental disabilities (IDD) do not undergo breast and cervical cancer screening at the same rate as women without IDD. IDDs are diagnosed in childhood, are lifelong, and involve difficulties in adaptive behaviors and intellectual functioning. Native American women also experience disparities in breast and cervical cancer screenings. Despite known disparities, women with IDD are often not included in health promotion programs, and there is a need for evidence-based programming for those with intersectional identities, such as Native American women with IDD. Objective This study aims to assess the feasibility and acceptability of My Health My Choice (MHMC), an adaptation of the Women Be Healthy 2 program. There are 2 parts to the study: adaptation of the Women Be Healthy 2 program and feasibility and acceptability testing of MHMC. Methods Individuals aged over 18 years who identify as Native American females with IDD and their caregivers (N=30 women-caregiver dyads) are eligible for the study. Participants, who are affiliated with 2 partnering sites in Arizona (1 rural and 1 urban), complete pre- and postsurveys assessing knowledge, self-efficacy, and screening expectations before and immediately after completing the program. In addition, all participants complete brief satisfaction surveys after each of the 6 educational sessions. A subsample of Native American women with an IDD (n=12), caregivers (n=12), and community health educators (n=2) who participate in the MHMC program will provide semistructured qualitative input regarding the content, delivery, and cultural relevance of the program. Results The adaptation of the culturally responsive MHMC program was completed in August 2021. In November 2021, the project team began recruitment for feasibility and acceptability studies. Feasibility will be examined using participation metrics, and acceptability will be measured using satisfaction measures. Pre- and postmeasures in cancer screening knowledge, self-efficacy, and screening expectations will examine improvements among participants. Conclusions The results of feasibility and acceptability testing of MHMC will guide future implementation studies of the program. International Registered Report Identifier (IRRID) DERR1-10.2196/37801

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Are Researchers Addressing Cancer Treatment and Survivorship Among People With Intellectual and Developmental Disabilities in the U.S.? A Scoping Review

Cited by 11 publications

References 46 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

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

An Adapted Cancer Screening Education Program for Native American Women With Intellectual and Developmental Disabilities and Their Caregivers: Protocol for Feasibility and Acceptability Testing

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