Women with intellectual disabilities (ID, formerly mental retardation) have a similar breast cancer incidence as the general population, but they have higher breast cancer mortality and lower rates of regular screening mammography. We conducted a feasibility study evaluating acceptability, demand and limited efficacy of a health education DVD about mammography for women with ID. The DVD was developed in order to address disability-specific barriers to mammography identified in prior studies, such as anxiety related to navigating the logistics of obtaining a mammogram. The DVD was found to be acceptable and feasible, and led to a moderate increase in mammography preparedness in this population. Study results suggest that this DVD-based intervention is an appropriate candidate for further study measuring efficacy and effectiveness in increasing regular mammography in women with ID, a disparity population.

Background Women with intellectual disabilities (ID) have similar breast cancer rates as the general population, but lower rates of regular mammography and higher breast cancer mortality rates. Though prior qualitative work demonstrates that women with ID face unique, disability specific barriers to mammography, we lack standardized, validated instruments for measuring knowledge of breast cancer screening in this population. In addition, much research related to adults with ID focuses on family or carer perspectives, rather than involving women with ID, themselves. Methods We first pilot tested a general population instrument measuring breast cancer knowledge, and found that it did not perform adequately in women with ID. In response, we developed the Mammography Preparedness Measure (MPM), a direct short interview tool to measure knowledge and preparedness in women with ID, themselves, rather than relying on caregiver or other reports, and using inclusive methodology We validated the MPM by assessing test-retest reliability. Results Average test-retest percent agreement of 84%, ranging from 74% to 91% agreement per item, with an overall kappa of 0.59. Conclusion The MPM appears to be a valid instrument appropriate for measuring mammography preparedness in women with intellectual disabilities. The success of this innovative tool suggests that direct, rather than informant-directed tools can be developed to measure health knowledge and cancer screening readiness in adults with ID, an important measure in studying and reducing disparities.

Background. Women with intellectual disabilities (ID) contract breast cancer at the same rate as the general population but have higher breast cancer mortality and lower rates of breast cancer screening. Many women with ID live in group homes or supported residences where they are cared for by direct support workers. While direct support workers are thought to influence client health, this effect is underresearched, and we lack tools for measuring staff empowerment and perceptions regarding client health. Methods. We developed and validated an instrument, the staff empowerment tool (SET), to measure staff empowerment as related to supporting clients in preventive health. Results. The SET was found to be a reliable instrument for measuring staff activation and empowerment in helping clients access mammography screening. Discussion. Quantifying staff empowerment and perspectives is important in studying and reducing disparities among adults with ID, a vulnerable population. Further research to determine the impact of staff empowerment levels on their clients' health and health care access is suggested. The SET is a valuable tool for measuring the construct of staff empowerment, evaluating interventions, and collecting data regarding variation in staff empowerment.

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