GRAIDs: a framework for closing the gap in the availability of health promotion programs and interventions for people with disabilities.

BACKGROUND: Evidence-based health promotion programs developed and tested in the general population typically exclude people with disabilities. To address this gap, a set of methods and criteria were created to adapt evidence-based health promotion programs for people with disabilities. In this first study, we describe a framework for adapting evidence-based obesity prevention strategies for people with disabilities. We illustrate how the framework has been used to adapt the U.S. Centers for Disease Control and Prevention's (CDC) obesity prevention strategies for individuals with physical and developmental disabilities. METHODS: The development of inclusion guidelines, recommendations and adaptations for obesity prevention (referred to as GRAIDs--Guidelines, Recommendations, Adaptations Including Disability) consists of five components: (i) a scoping review of the published and grey literature; (ii) an expert workgroup composed of nationally recognized leaders in disability and health promotion who review, discuss and modify the scoping review materials and develop the content into draft GRAIDs; (iii) focus groups with individuals with disabilities and their family members (conducted separately) who provide input on the potential applicability of the proposed GRAIDs in real world settings; (iv) a national consensus meeting with 21 expert panel members who review and vote on a final set of GRAIDs; and (v) an independent peer review of GRAIDs by national leaders from key disability organizations and professional groups through an online web portal. RESULTS: This is an ongoing project, and to date, the process has been used to develop 11 GRAIDs to coincide with 11 of the 24 CDC obesity prevention strategies. CONCLUSION: A set of methods and criteria have been developed to allow researchers, practitioners and government agencies to promote inclusive health promotion guidelines, strategies and practices for people with disabilities. Evidence-based programs developed for people without disabilities can now be adapted for people with disabilities using the GRAIDs framework.

Determinants of cervical cancer screening among women with intellectual disabilities: evidence from medical records.

OBJECTIVE: We examined receipt of cervical cancer screening and determinants of screening for women with intellectual disabilities in one Southeastern state. METHODS: Using medical records data from 2006 through 2010 for community-dwelling women with intellectual disabilities who were 18-65 years of age (n=163), we employed descriptive and bivariate statistics and a multivariate regression model to examine receipt of cervical cancer screening and the determinants of cervical cancer screening across women's sociodemographic and health-care provider characteristics. RESULTS: Of women 18-65 years of age with intellectual disabilities, 55% received a Papanicolaou (Pap) test during 2008-2010, markedly below the Healthy People 2020 targets or rates of Pap test receipt of women without intellectual disabilities. Women with intellectual disabilities who lived in residential facilities, those who lived in rural communities, and those who had an obstetrician/gynecologist had higher rates of receipt of care than other women with intellectual disabilities. CONCLUSIONS: Assertive measures are required to improve the receipt of cervical cancer screening among women with intellectual disabilities. Such measures could include education of women with intellectual disabilities, as well as their paid and family caregivers, and incentives for health-care providers who achieve screening targets.

Accuracy of self-reported cervical and breast cancer screening by women with intellectual disability.

This study examines the accuracy of self-report of cervical and breast cancer screening by women with intellectual disability (n  =  155). Data from face-to-face interviews and medical records were analyzed. Total agreement, sensitivity, specificity, positive predictive value and negative predictive value were calculated. Total agreement between self-report and medical record on receipt of both procedures was 75% for Pap test and 87% for mammography. Self-reported Pap tests and mammography showed >90% sensitivity, but specificity was low for both procedures (41% for Pap test, 30% for mammogram), indicating overreporting of receipt of Pap tests and mammography similar to women without disabilities. Clinicians and researchers are cautioned to corroborate self-reported data with other sources for patients and research participants with intellectual disability.

Family caregivers' perspectives on barriers and facilitators of cervical and breast cancer screening for women with intellectual disability.

Women with intellectual disability do not receive cervical and breast cancer screening at the same number as women without disabilities. Numerous barriers to receipt of screening have been reported by individuals with intellectual disability, paid caregivers, nurses, and other medical professionals. This study utilized semi-structured qualitative interviews to assess barriers to care from the perspective of female familial caregivers (n  =  32). Caregivers reported a number of barriers to care including not knowing or not believing the exam was needed for their family member and discomfort during exams. Caregivers also described enablers to screening. The most common response to what enabled the woman with an intellectual disability to receive the exam was preparation prior to the exam. A significant portion of the sample of family caregivers lacked knowledge about the need for cervical and breast cancer screening by women with intellectual disability. Policy recommendations are discussed.

Receipt of mammography among women with intellectual disabilities: medical record data indicate substantial disparities for African American women.

BACKGROUND: Little information exists on the receipt of mammography by African American women with intellectual disabilities. Given the high rates of mortality from breast cancer among African American women and low screening rates among women with intellectual disabilities, it is important to understand the health screening behavior of this population. OBJECTIVE: We compared rates of mammography receipt among African American and White women with intellectual disabilities (n = 92) living in community settings in one Southeastern state in the United States. METHOD: Data were collected from women's medical records or abstraction forms obtained from medical practices. Multivariate logistic regressions were modeled for receipt of mammography in one year, one of two years, or both study years (2008- 2009). Covariates included the women's age, living arrangement, severity of impairment, and urban/rural residence location. RESULTS: In 2009, 29% of African American women and 59% of White women in the sample received mammograms. Similar disparities were found for receipt of mammography in either 2008 or 2009 and both 2008 and 2009. These disparities persisted after inclusion of model covariates. White women with intellectual disabilities received mammograms at adjusted rates that were nearly three to five times higher than African American women. CONCLUSION: African American women with intellectual disabilities receive mammography at significantly lower rates than White women with intellectual disabilities. Assertive measures to improve the screening rates for African American women with intellectual disabilities are urgently needed.

Factors facilitating acceptable mammography services for women with disabilities.

BACKGROUND: Prior research has described general barriers to breast cancer screening for women with disabilities (WWD). We explored specific accommodations described as necessary by WWD who have accessed screening services, and the presence of such accommodations in community-based screening programs. METHODS: We surveyed WWD in the Carolina Mammography Registry to determine what accommodations were needed when accessing breast screening services, and whether or not these needs were met. The sample of 1,348 WWD was identified through a survey of limitations, with a response rate of 45.5% (4,498/9,885). Of the 1,348 WWD eligible for the second survey, 739 responded for a response rate of 54.8%. RESULTS: The most frequently needed accommodations were an accessible changing area with a bench (60.0%), oral description of the procedure by the technologist (60.5%), and handicapped/accessible parking (27.6%). Handicapped parking was the need most likely to go unmet (3.1%). CONCLUSION: Most needs are being met by radiology facilities and staff, and the few needs going unmet are related to the physical/built environment. Overall, for WWD who are in screening, the mammography system seems to be more accessible than generally perceived.

Cervical and breast cancer-screening knowledge of women with developmental disabilities.

Women with developmental disabilities are significantly less likely than women without disabilities to receive cervical and breast cancer screening according to clinical guidelines. The reasons for this gap are not understood. The present study examined the extent of women's knowledge about cervical and breast cancer screening, with the intention of informing the development and testing of interventions to increase cervical and breast cancer screening rates for these women. In a sample of 202 community-dwelling women with developmental disabilities, most women had little knowledge of cervical and breast cancer screening. Women who were living at home with family caregivers had the most limited understanding of cervical and breast cancer screening. Policy and practice implications are discussed.

The burden of heart disease among North Carolina adults with disabilities.

Data from the North Carolina Behavioral Risk Factor Surveillance System survey show that, from 2005-2010, cardiovascular disease (CVD) was approximately 3 times more prevalent among adults with disabilities than among those without disabilities. Likelihood of having multiple CVD risk factors was also increased. Early intervention to prevent CVD in people with disabilities is warranted.

Health and educational status of children raised by a caregiver with a disability.

BACKGROUND: Research on children raised by adults with disability is limited. Our goal was to provide a profile of the health and educational status of children raised by a caregiver with disability. METHODS: In 2007-2008, 4571 adults completed the North Carolina Behavior Risk Factor Surveillance System (BRFSS) and Child Health Assessment Monitoring Program (CHAMP) surveys. Analyses using weighted data provided population-based health/educational status comparisons of children (0 to 17 years old) raised by caregivers with and without disability. RESULTS: Twenty-three percent of caregivers reported disability. Rates of insurance coverage and preventive care did not differ by caregiver disability status, although children of caregivers with disability were more likely to have publicly funded insurance. The majority of children of caregivers with disability were in excellent/very good health (70%), healthy weight (58%), and making above-average grades (74%). Nonetheless, children raised by caregivers with disability appear to be at disproportionately higher risk for overall poorer outcomes. Children raised by caregivers with disability were more likely to be in fair/poor health (adjusted odds ratio [aOR] 2.2; 95% confidence interval [CI] 1.3 to 3.6), overweight/obese (aOR = 1.5, 95% CI 1.1-2.0), need medical/educational services (aOR = 2.0, 95% CI 1.5-2.6), have lower grades (aOR = 1.9, 95% CI 1.4-2.5), and higher rates of school absenteeism (aOR = 2.4, 95% CI 1.8-3.4), compared to children of caregivers without disability. CONCLUSION: Children raised by a caregiver with disability show good overall wellness; however, caregiver disability status was found to be associated with an increased risk for poor child health and educational outcomes. Future research is needed to clarify the causes of these disparities and inform policies to alleviate them.

Barriers to adherence to screening mammography among women with disabilities.

OBJECTIVES: Given the lack of screening mammography studies specific to women with disabilities, we compared reasons offered by women with and without disabilities for not scheduling routine screening visits. METHODS: We surveyed women in the Carolina Mammography Registry aged 40 to 79 years (n = 2970), who had been screened from 2001 through 2003 and did not return for at least 3 years, to determine reasons for noncompliance. In addition to women without disabilities, women with visual, hearing, physical, and multiple (any combination of visual, hearing, and physical) limitations were included in our analyses. RESULTS: The most common reasons cited by women both with and without disabilities for not returning for screening were lack of a breast problem, pain and expense associated with a mammogram, and lack of a physician recommendation. Women with disabilities were less likely to receive a physician recommendation. CONCLUSIONS: Women with disabilities are less likely than those without disabilities to receive a physician recommendation for screening mammography, and this is particularly the case among older women and those with multiple disabilities. There is a need for equitable preventive health care in this population.