Cancer Care Challenges for Individuals With Intellectual Disabilities

Intellectual Disabilities: Intellectual DisabilitiesA recent Canadian study, which found intellectually or developmentally disabled individuals have significantly worse cancer survival than the general population, elicited an unusually harsh editorial from the Lancet Oncology (2024; https://doi.org/10.1016/S1470-2045(24)00146-3). The editorial board of the prestigious British publication described the current research situation as “unacceptable,” chastising the cancer community for not taking more steps to understand the underlying causes of inequity to bridge the survival gap and improve patient outcomes. Although the Lancet's co-authors acknowledged the higher cancer mortality typically seen in this high-risk population—due, in part, to associated syndromes—they said the new findings are “stark.” Published in The Canadian Journal of Public Health, the population-based study found that people living with intellectual or developmental challenges are 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 individuals without these conditions, regardless of the stage of disease at diagnosis (2024; https://doi.org/10.17269/s41997-023-00844-8). The investigators analyzed mortality data from any cause and from cancer, specifically, during the study period between 2007 and 2019. The final patient cohorts included 123,695 patients with breast cancers, 98,809 patients with colorectal cancers, and 116,232 patients with lung cancer. The Lancet editorial board said health care providers need greater awareness of the unique hurdles patients struggling with these disabilities face. In addition, there need to be more opportunities for specialized education in this area and “above all, patient-focused and individualized care.” Despite increasing discussion in the oncology community concerning disparities in cancer control, there are no current clinical guidelines related to treat or screen for cancer in individuals who are intellectually or developmentally delayed. Often, the onus is on the patient to seek out resources on their own, a capability, in many cases, beyond their reach. Such was the painful dilemma facing Anna Reisman, MD, and her family after Reisman's sister, Deborah, was diagnosed with breast cancer in her early 40s. Reisman, who is Professor and Director of the Program for Humanities in Medicine at Yale School of Medicine, wrote about the experience in the New England Journal of Medicine, noting it became “distressingly clear” that the care her sister needed presented too many untenable options, given both her autism and severe intellectual disability. For example, her sister's inability to grasp why plastic tubes would remain attached to her skin after a radical mastectomy rendered this surgery undoable. “Deborah liked to fiddle with things, and she might tug at the [surgical] drains until they loosened and came out,” Reisman wrote. “And, if she felt pain or discomfort? It was hard to fathom how her caregivers would attend to symptoms that she didn't have the capacity to describe.” Radiation and chemotherapy posed additional challenges for Deborah, including how to explain a chemotherapy port she might try to wriggle out of, or the treatment's side effects, like nausea or fatigue. Worse yet, once Reisman and other family members, along with Deborah's oncologist and breast surgeon, met to discuss options, a lack of treatment guidelines from the National Comprehensive Cancer Network and other cancer groups left them “flummoxed.” Reisman said they ultimately decided on what seemed a humane compromise: less extensive breast surgery, requiring no surgical drains and no chemotherapy or radiation. Deborah did well for 4 or 5 months before the cancer returned, and then she died. “Maybe, it returned because we had cut corners,” Reisman said, posing an unanswerable question. However, had there been an adult life specialist or someone with expertise in working with intellectually disabled adults—as some now propose—the experience might have eased Deborah's discomfort, Reisman said, and reassured those who loved her most that someone was always there to help. Since the article's publication, many colleagues, students, and even strangers have shared similar stories, according to Reisman. “It was fascinating and troubling,” she said of the response. “Clearly, there's a great need here.” Melissa Parisi, MD, PhD, Chief of the Intellectual and Developmental Disabilities Branch at the National Institute of Child Health and Human Development, wouldn't disagree. She noted that, despite its name, the institute also deals with adults coping with intellectual and developmental difficulties across the entire lifespan. And, in recent years, there's been increasing recognition that this older population encounters significant health disparities with respect to access to early screening and care, not just in cancer, she said. The INCLUDE (INvestigation of Co-occurring conditions across the Lifespan to Understand Down syndromE) Project, which is currently underway, aims to address many of these concerns. Parisi and others hope it will provide a template for meeting the health and quality-of-life needs of many other underrepresented groups with intellectual and developmental disabilities. INCLUDE is following 500 adults with Down syndrome, the most common form of genetic disability, to identify conditions common to the syndrome and bolster recruitment and greater inclusion in clinical trials. Although INCLUDE is focused solely on Down syndrome, Parisi stressed, “It's an example of how we can include these individuals in research, as well as others,” in the future. Susan Jenks is a contributing writer.

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