The New England Journal of MedicinePerspective: Standard of Care

Invisible Patients: Addressing the Gap in Cancer Care for Intellectually Disabled Adults

The article presents a compelling narrative of the challenges faced by intellectually disabled adults when diagnosed with cancer, using the case study of Deborah, a woman in her early 40s with intellectual disabilities and autism, who was diagnosed with breast cancer. The story underscores the urgent need for more inclusive research and resources to ensure equitable cancer treatment for this population.

Key Points

• Deborah’s diagnosis and treatment were complicated by her inability to understand or tolerate standard procedures.
• The standard of care was deemed out of reach due to Deborah’s specific needs and behaviors.
• A less extensive version of surgery was chosen as the most humane option, but the cancer returned within months.
• Intellectual disabilities affect roughly 1% of the US population, implying thousands face similar challenges each year.
• There is a significant lack of guidance from medical literature for treatment decisions in intellectually disabled patients.
• The invisibility of patients with intellectual disabilities is a problem in research and major cancer-treatment guidelines.
• More inclusive research and resources are needed to ensure equity in cancer treatment for this population.

With an average life expectancy of about 20 years less than that of the general population in the United States, people with intellectual or developmental disabilities are undercounted in US public health surveillance and underrepresented in medical research.

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