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Women with intellectual disability (ID) have similar rates of breast cancer as the general public, but higher breast cancer mortality and lower rates of regular screening mammography. Screening rates are lowest among women who live with their families. Though women with ID often make decisions in partnership with their relatives, we lack research related to family member perspectives on mammography. We conducted a qualitative study of family members of women with ID, with an interview guide focused on health care decision making and experiences, and breast cancer screening barriers, facilitators, and beliefs as related to their loved ones. Sixteen family members underwent semistructured interviews. Important themes included mammography as a reference point for other social and cultural concerns, such as their loved one's sexuality or what it means to be an adult woman; fear of having to make hard decisions were cancer to be diagnosed acting as a barrier to screening; a focus on quality of life; and desire for quality health care for their loved one, though quality care did not always equate to regular cancer screening. Adults with ID are valued members of their families, and their relatives are invested in their well-being. However, families fear the potentially complicated decisions associated with a cancer diagnosis and may choose to forgo screening due to misinformation and a focus on quality of life. Effective interventions to address disparities in mammography should focus on adults with ID and their families together, and incorporate the family context.

Though it is widely recognized that people with intellectual and developmental disabilities (IDD) face significant health disparities, the comprehensive data sets needed for population-level health surveillance of people with IDD are lacking. This paucity of data makes it difficult to track and accurately describe health differences, improvements, and changes in access. Many states maintain administrative health databases that, to date, have not been widely used for research purposes. In order to evaluate the feasibility of using administrative databases for research purposes, the authors attempted to validate Massachusetts' administrative health database by comparing it to a large safety net hospital system's patient data regarding cancer screening, and to the state's service enrollment tables. The authors found variable representativeness overall; the sub-population of adults who live in 24-hr supported residences were better represented than adults who live independently or with family members. They also found a fairly low false negative rate for cancer screening data as compared with the “gold standard” of hospital records. Despite some limitations, these results suggest that state-level administrative databases may represent an exciting new avenue for health research. These results should lend context to efforts to study cancer and health screening variables using administrative databases. The present study methods may also have utility to researchers in other states for critically evaluating other state IDD service databases. This type of evaluation can assist researchers in contextualizing their data, and in tailoring their research questions to the abilities and limitations of this kind of database.

Primary care physicians who care for adults with intellectual disability often lack experience with the population, and patients with intellectual disability express dissatisfaction with their care. Establishing a secure primary care relationship is particularly important for adults with intellectual disability, who experience health disparities and may rely on their physician to direct/coordinate their care. The authors conducted semistructured interviews with 22 family physicians with the goal of identifying educational needs of family physicians who care for people with intellectual disability. Interviews were transcribed and coded using tools from grounded theory. Several themes related to educational needs were identified. Physician participants identified themes of “operating without a map,” discomfort with patients with intellectual disability, and a need for more exposure to/experience with people with intellectual disability as important content areas. The authors also identified physician frustration and lack of confidence, compounded by anxiety related to difficult behaviors and a lack of context or frame of reference for patients with intellectual disability. Primary care physicians request some modification of their educational experience to better equip them to care for patients with intellectual disability. Their request for experiential, not theoretical, learning fits well under the umbrella of cultural competence (a required competency in U.S. medical education).