My long-term career goal is to become an independent researcher focusing on cancer screening for people with intellectual disabilities. My immediate goal is to begin with a mentored K07 project on mammography in women with intellectual disabilities. My proposed K07 uses mixed methods to learn more about the cancer screening behaviors of women with ID and apply that knowledge to a feasibility study of an intervention, while simultaneously expanding my education in behavioral theory, qualitative research, and intervention planning. The proposal consists of three projects: the first, a secondary data analysis, will identify the characteristics of women with intellectual disabilities and the systems of care that are associated with completion of mammograms (Aim 1). The second, a qualitative analysis, will develop hypotheses on barriers and obstacles to screening and preferred methods to overcome them, using the context of the ecological and transtheoretical models (Aim 2). The information from these two projects will be used to inform the third project, a feasibility study of an intervention to increase mammography screening in women with ID (Aim 3) which is based on some of the elements of the Patient Navigator Research Program (PNRP).
These aims will further my investigative training and help me transition to a research career in cancer prevention and control, focusing on the unique cancer screening needs of this special population. Improving selected health benchmarks and access to care for people with ID has been a major goal of Healthy People 2010 and Closing the Gap. An important area targeted for improvement is preventive care and the early detection of disease. As people with intellectual disabilities live longer, it is important to emphasize screening and prevention, with an eye toward early detection and treatment, for several reasons: first, to improve quality and duration of life;second, to ensure that people with intellectual disabilities are receiving quality care in the community;third, to limit the resources spent on hospitalization and tertiary care of previously undiagnosed conditions;and fourth, to decrease health disparities for this growing, aging, and underserved segment of our U.S. population.
About 8 million people with ID currently live in the US, and they live to an average age of 66. There has been very little research to date regarding the diminished uptake of cancer screening by this population. It is important to take initial steps toward improving cancer screening rates in order to reduce morbidity, mortality and cost associated with late detection of treatable cancers for these patients.
