Receipt of cancer care among stage IV non-small-cell lung cancer patients with and without intellectual or developmental disabilities: a population-based retrospective cohort study

Background — Little is known about non-curative lung cancer care, including palliative care, for adults with intellectual, or developmental disabilities. Clinical management may vary due to health status, ability to communicate, access to inclusive healthcare, and healthcare bias.

Aim — We examined the receipt of cancer-directed consultations, treatments and palliative care among stage IV non-small-cell lung cancer (NSCLC) patients with and without intellectual or developmental disabilities.

Design — This was a population-based retrospective cohort study using provincial routinely collected health data. Receipt of consultations with surgeons, medical oncologists, and radiation oncologists, receipt of systemic therapy, radiation, and surgery as well as receipt of palliative care in the year following diagnosis were compared between people with and without intellectual or developmental disabilities. Cause-specific Cox proportional hazards regression, accounting for death as a competing event, was used.

Setting/participants — Adults diagnosed with stage IV NSCLC between 2010 and 2022 in Ontario, Canada.

Results — The study included 33,184 individuals diagnosed with stage IV NSCLC (n intellectual or developmental disabilities = 106). Adults with intellectual or developmental disabilities were significantly less likely to receive any cancer-directed consultation (hazard ratio [HR] = 0.62; 95% confidence interval [CI] 0.49–0.78), any cancer-directed cancer treatment (HR = 0.52; 95% CI 0.39–0.70), and radiation or systemic therapy (HR = 0.49; 95% CI 0.36–0.66) than non-disabled adults. There was no statistical difference in receipt of palliative care (HR = 1.15; 95% CI 0.93–1.41).

Conclusion — These findings contribute to an emerging evidence base documenting differences in cancer treatment and outcomes among adults with intellectual or developmental disabilities. Person-center research is needed that examines end-of-life lung cancer care treatment decision-making to identify and mitigate barriers to optimal management.