E5034. Breast Cancer Screening in Patients with Intellectual Disabilities: Improving the Mammography Experience From the Perspective of the Patient
Authors
James Rawson;
Beth Israel Deaconess Medical Center
Victoria Podsiadlo;
Beth Israel Deaconess Medical Center
Background
Adults with intellectual disabilities (ID) are recognized as a health disparities population, notably in preventative health screening. It has been demonstrated that the rate of breast cancer in women with ID is similar to that of the general population, but women with ID are not being screened for breast cancer at the same rate as women without ID. Women with ID also have a higher mortality rate from breast cancer than the general population and are three times more likely to be diagnosed with late-stage cancer. Women with ID have reported that they are motivated to have at least one mammogram, increasing the importance of a positive screening experience.
Educational Goals / Teaching Points
Review solutions to the challenges patients with ID face when getting screening mammography.
Key Anatomic/Physiologic Issues and Imaging Findings/Techniques
Equitable access to screening mammography in this population is a challenge, with multiple barriers which have intra/interpersonal, institutional, community, and policy factors. Multiple sources have identified women’s limited understanding of breast cancer and benefits of mammography screening as barriers. There are also multiple nonpatient-driven factors, such as barriers related to facility infrastructure, including limited accessible parking and public transportation, as well as mammographic equipment which may not be suitable for patients requiring alternative positioning. There are also multiple well documented barriers related to healthcare staff, including insufficient education regarding the needs of patients with ID, ineffective communication, and provider attitudes which would make a patient less likely to return for future screening appointments. It is also important to examine the barriers to screening as experienced by patients with ID themselves, as we gain insight into how women with ID might think differently about mammography when compared to women without ID. While women report fear of pain and embarrassment as barriers, there are also other barrier themes which can inform opportunities for improvement. In particular, women with ID have commonly reported feeling inadequately prepared for and upset by being unfamiliar with mammography, compared to their confidence and mastery in performing their daily activities. This has resulted in feelings of anxiety and distrust, which women reported would cause them to not return for future screening.
Conclusion
As we identify areas for improvement, it is important to consider the suggestions that women with ID have offered to address their concerns. The key expectations of women with ID are to be appropriately informed, appropriately involved, and treated with respect. For example, women have suggested that having technologists take the time to demonstrate how a mammogram is done prior to the examination, walking them through the process gently during the examination, providing emotional support, using language at their level of understanding, and using educational aids are just a few ways to facilitate a positive screening mammography experience.
