Hospitalizations for reproductive cancer treatment of US women with intellectual and developmental disabilities

Little is known about reproductive cancer experiences and outcomes for adult women with IDD, although the risk of cancer in the general population and among people with IDD is similar. The experience of treating cancer patients with IDD is unique to that of the general population.  People with IDD are not always told of their cancer diagnosis, with the decision to disclose the diagnosis often left to guardians and caregivers. This descriptive, exploratory study sought to determine the relative prevalence of reproductive cancer hospitalization among women with and without ID in the US, and to identify the characteristics of women with ID who received such treatment. Data were drawn from the 2010 Healthcare Cost and Utilization Project (HCUP), which is nationally representative of hospital discharges. We compared hospitalizations for women with and without IDD across a variety of demographic characteristics. Women with IDD who were hospitalized for cancer treatment were significantly younger than women without ID, and were more likely than other women to have public insurance coverage. Women with IDD had longer mean hospital stays, and were much more likely to live in Zip codes with low median income. Understanding cancer prevalence and treatment for individuals with IDD is an important priority, particularly because of the overwhelming evidence that these individuals receive inadequate health care. Further research is warranted to determine whether women with ID are being diagnosed later than other women, and if the quality of care they receive is adequate.