Patients with intellectual or developmental disabilities (IDD) are more likely to die from breast, colorectal, and lung cancers than those without IDD, new research from Ontario, Canada, suggested.
In a population-based retrospective cohort study that included almost 340,000 participants, patients with IDD were 2.28 times more likely to die of breast cancer, 2.57 times more likely to die of colorectal cancer, and 1.38 times more likely to die of lung cancer during the study period than those without IDD.
With few exceptions, worse survival for patients with IDD persisted regardless of stage at diagnosis, according to study author Alyson Mahar, PhD, principal investigator at Queen’s University in Kingston, Ontario, Canada, and colleagues.
Alyson Mahar
The team’s earlier literature review on cancer outcomes for adults with IDD documented “almost no research” on delays in cancer diagnosis and their consequences (eg, late-stage disease) or survival following a cancer diagnosis, Mahar told Medscape Medical News. “Our team saw the lack of information as a major barrier to equitable cancer care access that needed to be addressed.”
The current study was published on February 5 in the Canadian Journal of Public Health.
Worse Survival
The researchers examined data for adults with breast (female), colorectal, or lung cancer diagnosed from 2007 through 2019 in Ontario. Patients’ IDD status before cancer was determined using an established algorithm. Eligible diagnoses included intellectual disabilities, fetal alcohol syndrome, autism, and Down syndrome.
A total of 123,695 patients with breast cancer, 98,809 patients with colorectal cancer, and 116,232 patients with lung cancer were followed from their date of index cancer diagnosis until they died or December 31, 2021, whichever came first. The main outcomes were death from any cause and death from cancer.
IDD prevalence was 0.39% among patients with breast cancer, 0.51% among patients with colorectal cancer, and 0.33% among patients with lung cancer.
Patients with IDD had significantly worse survival than those without IDD across cancer cohorts. Five-year survival for patients with IDD vs no IDD was 61.5% vs 81.7% for those with breast cancer, 34.2% vs 56.6% for colorectal cancer, and 11.9% vs 19.7% for lung cancer.
The adjusted hazard ratios of all-cause death were 2.74, 2.42, and 1.49 times higher for patients with breast, colorectal, and lung cancers with IDD than for those without.
Subsequent analyses revealed that the cumulative incidence of cancer-specific death differed significantly by IDD status in the breast and colorectal cancer cohorts but not in the lung cancer cohort. After adjustment, patients with IDD were 2.28 times more likely to die of breast cancer, 2.57 times more likely to die of colorectal cancer, and 1.38 times more likely to die of lung cancer than those without IDD.
“With few exceptions, worse survival for people with IDD persisted, regardless of stage at diagnosis,” the authors wrote. “Identifying and intervening on the factors and structures responsible for survival disparities is imperative.”
The study had several limitations. For example, prevalences of IDD in this study were lower than estimates in Canada overall. The algorithm to identify people with IDD is not validated, and misclassifications were likely among younger adults. Also, the IDD definitions group together multiple diagnoses and severities of disability.
Physician Training Useful
Physician training could help make care more equitable for patients with IDD, said Mahar. She pointed to the Developmental Disabilities Member Interest Group of the College of Family Physicians of Canada, which provides webinars and other training for physicians to address the health of patients with IDD safely and inclusively.
In addition, Canada has guidelines for primary care physicians working with patients with IDD, and the Canadian Society for Disability and Oral Health includes an education component for professionals providing oral healthcare to patients with disabilities. There are no guidelines or organizations specific to cancer yet, Mahar noted.
“Clinicians can help by asking people with IDD, their families, and caregivers what they need to have the option to live well and long with cancer,” she said. They could also “reflect on their own implicit and explicit biases, as well as how gaps in their knowledge impact the healthcare they provide to adults with IDD.”
“More broadly, they could consider how ableism within medicine and nursing may contribute to inequitable outcomes,” she added. “Seeking out training or resources to better support adults with IDD and leading the integration of formal education into the curriculum for medical, nursing, and other allied health professionals are ways to tangibly enhance individual clinicians’ abilities to provide cancer care to adults with IDD.”
Put in the Time
Nancy Chan, MD, director of breast cancer clinical research and cochair of the Protocols Review and Monitoring Committee at NYU Langone Perlmutter Cancer Center in New York City, has several patients with cognitive or physical disabilities. She told Medscape Medical News that one of her new patients with cerebral palsy had switched from another center. The patient, who is wheelchair-bound but cognitively intact, said that whenever she saw her former doctor, “the team didn’t speak to her but kept addressing her health aide because they assumed just by her appearance that she wasn’t all there, but actually, she’s very much there. It just took much longer to talk with her because her speech is slower.”
Nancy Chan, MD
Working with patients with IDD usually means putting in more time and arranging an extended visit when possible, Chan said. It’s also helpful if the institution has social services available. “Not every institution has this, but for our patients, having that extra person who can reach out and check in on them, not just from a medical, but also from a support standpoint, is important.”
“These patients often have comorbidities,” Chan added. “So, good communication among doctors in various disciplines is important, too, and that also takes time. I would say, we try our best. I think the more mindful we are, the more likely we would make the extra effort because we know we can make a difference.”
The study was supported by the Canadian Institutes of Health Research. Mahar and Chan reported no relevant financial conflicts.
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