Intellectual and developmental disabilities and cancer symptom severity: a matched retrospective cohort study

Background — Individuals with intellectual or developmental disabilities (IDD) face increased cancer risks and disparities in cancer care accessibility and quality. Despite these concerns, there is limited research on cancer symptomology among individuals with IDD.

Aims — This study explored differences in cancer symptoms between individuals with and without IDD.

Methods — We conducted a matched retrospective study of adults in Ontario, Canada, with and without IDD who underwent cancer symptom screening using the Edmonton Symptom Assessment Scale-revised (ESAS-r), a patient-reported outcome measure, within 5 years of a new primary cancer diagnosis. Using administrative health data, we performed 1:1 hard matching of individuals with cancer and IDD to those without IDD on age at diagnosis, sex, diagnosis year, cancer type, and registration at a regional cancer center. Conditional logistic regression models compared odds of moderate to severe and severe cancer symptoms.

Results — Among 873 matched pairs, individuals with IDD had higher odds of experiencing severe (vs. moderate, mild, or no) cancer-related symptoms compared to those without IDD. Symptoms included anxiety, depression, drowsiness, pain, shortness of breath, tiredness, and poor well-being. Largest magnitudes of effect were for anxiety (odds ratio; OR: 2.20; 95% confidence intervals, CI: 1.68, 2.89) and depression (OR: 2.16; 95% CI: 1.54, 3.02). Similar trends were observed for moderate to severe cancer symptoms compared to mild or no symptoms.

Conclusions — Patients with both cancer and IDD report higher symptom severity than those without IDD, emphasizing the importance of tailored interventions and support services to address their unique needs and alleviate symptom burden.