The study consists of a one-time digital survey, which will take about 20 minutes to complete. The survey should be completed by the parents or caregivers of the patient with intellectual disability. Caregivers include anyone besides the biological parent that is the primary caregiver for the patient (i.e., sibling, grandparent, aunt/uncle, non-relative guardian, etc.) Patients themselves are encouraged to work with their family member or caregiver to complete the survey if desired. This study is needed because little research is available regarding cancer screening in the intellectual disability population. From the data and literature that is available, it is clear that patients with intellectual disability are being screened for breast, colon, and prostate cancer at lower rates compared to the general population, although both groups have about the same risk to develop cancer during their lifetime. In order to rectify this discrepancy in care, we must first identify the barriers these patients face when attempting to carry out routine cancer screening.
What are the goals of the study?
Our goal is to understand the experiences of patients with intellectual disability in regard to screening for cancer, for example colonoscopies for colon cancer and mammograms for breast cancer. For patients not being screened, we hope to learn about any barriers faced. We want to provide parents and caregivers the opportunity to share their thoughts and opinions on this topic.
What will happen during the visit or online?
Participants will complete a one-time digital survey that will take about 20 minutes to complete.
How will this help families?
Autistic individuals or families of autistic individuals may have questions or concerns about their loved one’s participation in cancer screening. This study aims to better understand their opinions and experiences in order to be able to provide resources to educate on recommended cancer screenings and advocate for standard care in this population.