Receipt of mammography among women with intellectual disabilities ...

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aLurie Institute for Disability Policy, Heller School for Social Policy and .... medical procedures.22e24 In addition, health care providers may lack .... HIPAA form.
Disability and Health Journal 6 (2013) 36e42 www.disabilityandhealthjnl.com

Research Paper

Receipt of mammography among women with intellectual disabilities: Medical record data indicate substantial disparities for African American women Susan L. Parish, Ph.D., M.S.W.a,*, Jamie G. Swaine, M.S.W.b, Esther Son, Ph.D.a, and Karen Luken, M.S.c a

Lurie Institute for Disability Policy, Heller School for Social Policy and Management, Brandeis University, 415 South Street, MS 035, Waltham, MA 02454, USA b School of Social Work, University of North Carolina at Chapel Hill, 325 Pittsboro Street, CB 3550, Chapel Hill, NC 27599, USA c North Carolina Office on Disability and Health, FPG Child Development Institute, University of North Carolina at Chapel Hill, Chapel Hill, NC 27599, USA

Abstract 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 5 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 (2008e 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. Ó 2013 Elsevier Inc. All rights reserved. Keywords: Women’s health; Mammography; Breast cancer screening; Racial disparities; Intellectual disabilities

The Institute of Medicine1 provides overwhelming evidence that African Americans experience markedly worse health care access and utilization and health outcomes as compared to Whites, across a range of health domains. Barriers to care such as lack of referral by a physician,2 lack of insurance,3 and social or cultural barriers may prevent African American women from receiving preventive screenings. Historically, African American women in the Financial disclosure/conflict of interest: The authors declare there are no conflicts of interest. Support for the preparation of this manuscript was provided by the National Institute on Disability and Rehabilitation Research grant #H133G090124; the Lurie Institute for Disability Policy at Brandeis University; and the North Carolina Office of Disability & Health. * Corresponding author. Tel.: þ1 781 739 3928; fax: þ1 781 736 3773. E-mail address: [email protected] (S.L. Parish). 1936-6574/$ - see front matter Ó 2013 Elsevier Inc. All rights reserved. http://dx.doi.org/10.1016/j.dhjo.2012.08.004

US have received mammography screening at rates far below those for White women.2,4 However, some recent evidence suggests that African American and White women in the United States are now receiving mammography screenings at approximately similar rates.5,6 Breast cancer is the most commonly diagnosed cancer and second leading cause of cancer death among African American women in the United States.7 The age-adjusted breast cancer incidence for African American women in the US is 114.7 per 100,000 compared to 121.7 per 100,000 for White women.7 However, African American women have higher rates of breast cancer mortality7e11 and a five year post-diagnosis survival rate of 78% compared to 90% among White women.7 Overall, adults with intellectual disabilities have similar cancer rates as nondisabled people.12 However, the research on the rates of breast cancer for women with intellectual

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disabilities has been mixed with one study reporting similar rates to women without disabilities12 and other studies reporting reduced rates.13,14 Women with intellectual disabilities have both protective and risk factors for breast cancer. Low estrogen levels found in some women with intellectual disabilities likely reduce their risk of developing breast cancer. However, hypogonadism, nulliparity, and obesity increase this risk.15,16 Lower breast cancer incidence among women with intellectual disabilities may be related to lower screening uptake rather than actual lower incidence,13 and adherence to clinical screening guidelines is therefore still encouraged.17 Despite this recommendation, significantly worse rates of breast cancer screening have been found for women with intellectual disabilities.18e20 A national study found that women with intellectual disabilities were 45% less likely to receive mammography than women without disabilities.20 Wilkinson and colleagues found that only 53% of their Massachusetts sample had received a mammogram in the previous 2 years compared with 85% of the state’s general population.21 Women with intellectual disabilities face numerous barriers to receiving appropriate health care. Women with intellectual disabilities often have communication problems and lack knowledge or understanding of medical procedures.22e24 In addition, health care providers may lack appropriate training related to intellectual disabilities or hold pejorative attitudes about individuals with intellectual disabilities and therefore not encourage health screenings.23 In its exhaustive study of racial disparities in U.S. health care, the Institutes of Medicine1 concluded that pervasive and persistent patterns of reduced health care access and worse quality care have negative consequences for the health of African Americans living in the United States. Even after controlling for education, income and other confounders, these disparities endure across many different health care indicators.1 The Institutes of Medicine theorized that disparities emerge from the interaction of factors at the level of the patient, the clinical encounter, and the health care system. This theory suggests that African American women with intellectual disabilities may receive screening mammography at rates lower than those for White women with intellectual disabilities because of the fact that their providers may hold pejorative attitudes about women with disabilities23 as well as about African Americans.1 The Institutes of Medicine has suggested that these types of factors interact to produce worse health care access for African Americans.1 We therefore hypothesize that African American women with intellectual disabilities, even after controlling for other factors that influence receipt of care, will have worse rates of mammography receipt than White women with intellectual disabilities. Given the high breast cancer mortality rates among African American women and the low screening rates of women with intellectual disabilities, understanding the screening experiences of African American women with intellectual disabilities is critically important.

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Methods The present study analyzed retrospective medical record data obtained as part of a larger project that includes a multisite, randomized controlled trial that is testing an intervention to promote cervical and breast cancer screening among women with intellectual disabilities.22 The study protocol was approved by our university’s Institutional Review Board. Sample The larger randomized controlled trial includes 199 women with intellectual disabilities from across one Southeastern state in the United States. To enroll in the study women had to be aged 18 or older, have an intellectual disability, and be able to participate in a brief in-person interview. Women were recruited from 21 community colleges, community-based rehabilitation programs, and residential and/or vocational disability service organizations. The data analyzed here were obtained for the period prior to the women’s participation in the intervention. From this larger sample, we excluded women who were under the age of 40 years because of the mammography guidelines that were current in 2009.25 Asian, American Indian, and Latina women were excluded from these analyses because they represented fewer than 5% of the sample. These exclusions reduced the sample to 40 African American and 56 White women. Among this sample of women aged 40 and older, mammography data were obtained for 38 African American and 54 White women in 2009, yielding response rates of 95% for African American women and 96% for White women. A power calculation was performed using STATA 11 and indicated that the study has 90% (2009), 80% (2008 or 2009), and 90% (2008 & 2009) power to detect differences in proportions of receiving mammography between African American and White women with intellectual disabilities at a one-sided 5% significance level. The entire sample of women aged 40 and over is described in Table 1. African American women were significantly less likely to live in formal residential settings than White women. We considered a formal residential setting to be a group home, nursing facility, supervised apartment, or foster care. For adults with intellectual and developmental disabilities in the US aged 35e 74, an estimated 58% live in formal residential settings.26 This is similar to the 54% of our sample aged 40e 71 who lived in residential settings. African American women were also more likely to have severe impairments in comparison with White women. There were no differences in the likelihood of living in a rural or urban setting, insurance status, medical practice type, or age. The mean age of the women was 51 years for African American women and 50 years for White women. Recruitment and consent A description of the recruitment and consent process and the larger study sample is described in detail elsewhere.27

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Table 1 Description of sample Characteristic Living arrangement Lives in formal residential settingb Lives with family Lives alone or with spouse Other Residential locationc Urban Rural Severity of impairment Mild or moderate Severe Insurance statusc Uninsured Insured Medical practice typec OB/GYN Family practice/primary care Internal medicine Pediatrics & other Dependent variable Received mammogram in 2009 Received mammogram in 2008 or 2009 Received mammogram in both 2008 and 2009 Age

Black (n 5 40)

White (n 5 56)

n

%

n

%

20 14 6 0

50 35 15 0

42 10 2 2

75 17.8 3.6 3.6

11 28

28 72

14 41

25.5 74.5

31 9

77.5 22.5

54 2

96.4 3.6

0.007**

1 32

3 97

0 52

0 100

0.388

4 21 7 4

11.1 58.3 19.5 11.1

10 26 10 8

18.5 48.2 18.5 14.8

1.423

11 19 4 M 51

29 51 11 SD 1.1

32 39 23 M 50

59 76 43 SD 1.0

8.232** 6.021* 10.628** t 1.043

c2

p-valuea 0.013*

0.088

0.766

0.700

*p ! 0.05, **p ! 0.01. a Fisher’s exact probability test ( p-value were shown because Fisher’s exact test does not have a ‘‘test statistic’’, but computes the p-value directly). b Includes group home, supervised apartment, and adult foster care. c The total number is not 96 because of missing data.

We provide a brief overview here. Information sessions were held at 21 partner sites to review the research study. Community partner sites included vocational and residential service organizations and compensatory education programs. The latter are a free community college program offered to adults with intellectual disabilities in each county in the state. Women with intellectual disabilities meeting the study criteria and their family, guardians, or caregivers were invited to attend the information sessions. During information sessions, informed consent was obtained from interested women. The research team presented a short video describing the study. They also reviewed consent forms with the women, held a group discussion about the study, and answered all individual questions. Consent forms included pictures for women with low or no literacy. If a woman had a legal guardian, assent was first obtained from the woman and then consent was obtained from her guardian. If the woman did not assent or the guardian did not consent, the woman was not enrolled in the study. In addition, the Health Insurance Portability and Accountability Act of 1996 (HIPAA) was reviewed and signed if the potential participant agreed to let the research team contact her health care provider to obtain data on health insurance status and receipt of physical exams, Pap tests, and mammography.

After recruitment at 21 partner agencies, 203 (75%) women enrolled in the study. Of those 203 enrolled, 70 (34%) had legal guardians. However, four women withdrew from the study prior to medical record collection leaving a total of 199 women in the medical record analyses. Medical record data collection procedure Women who enrolled in the study participated in approximately four in-person, computer-assisted interviews with the research team. Women were paid $15 US for each interview. During interviews, participants were asked to identify their health care provider and where his or her office was located. However, many participants were unable to recall the provider’s name or knew only a partial name or location of the physician’s office. To correctly identify providers and their locations, the research team, with the women’s permission, worked with the service provider organization staff to determine the health care providers. Health care providers were correctly identified for 95% of the entire sample in 2009 and 90% in 2008. The research team subsequently sent an information request packet to the record department at each medical practice. The information request packet included a letter signed by the project manager describing the study, a medical

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record abstraction form, and a copy of the patient’s signed HIPAA form. Medical practices were asked to indicate whether or not the woman was insured, insurance type, and dates the woman received mammography. These data were requested for the 4-year period from 2006e 2009. Due to significant difficulties correctly identifying the health care providers and retrieving data for earlier years, we only report data for 2008e2009 here. Measures Independent variable: Race. Women’s racial identity was obtained from the coordinators of the community programs which the women attended. Dependent variable: Receipt of screening mammography. We analyzed three dependent variables: (1) mammography receipt in 2009; (2) mammography receipt in either 2008 or 2009; and (3) mammography receipt in 2008 and 2009. Control variables: Four model covariates included (1) women’s age, (2) urban or rural home location based on the U.S. Census Bureau’s28 designation for each woman’s home community, (3) severity of the women’s impairment classified as mild or moderate and severe, reported by the disability service provider organization from student or service records; and (4) living arrangement, which was designated as formal residential setting (group homes, supervised apartments, adult foster care, or nursing facilities), with family (including mothers, fathers, siblings, aunts, uncles, grandparents, nieces and nephews) or alone or with partner, defined as women who lived with a romantic partner or independently). Insurance status (uninsured or not) was not included as a model covariate because only one woman in the sample was uninsured. Analyses Bivariate descriptive analyses and multivariate logistic regression analyses were conducted using the statistical software package STATA 11. Pearson’s chi-squared, Fisher’s exact probability and two independent samples t-tests were conducted to describe the sample and determine if there were any differences between the African American and White women (Table 1). Categorical variables such as women’s living arrangement, residential location, severity of impairment, insurance status, and receipt of mammogram in 2009, 2008 or 2009, both 2008 and 2009 were analyzed using Pearson’s chi-squared test or Fisher’s exact probability test. The Fisher’s exact test was appropriately used in instances of one or more of the cells having an expected frequency of five or less.29 The continuous variable women’s age was analyzed using two independent samples t-test. Adjusted comparisons were modeled using multivariate logistic regression or exact logistic regression, which is appropriate for binary outcomes like mammography receipt. Exact logistic regression is used to estimate models

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for binary outcomes if empty or small cells exist by doing a crosstab between categorical predictors and the outcome variable. For ease of interpretation, we report the odds ratios and 95% confidence intervals for these models. The odds ratio represents, for each independent variable and covariate, the increased or decreased probability that women received mammography relative to other levels of that variable. African American women served as the referents in these models. Reference categories for the covariates included: living in a formal residential setting, lives in an urban setting, and impairment severity is mild or moderate.

Results Sixty-two different medical practices reported mammography data for the 92 women. Of those sites reporting mammography data, 51% were primary care or family physicians, 20% were internal medicine, and 26% were OB/GYNs. The remainder of the medical data was received from the women’s group homes, hospitals, or radiologists. Table 1 presents the unadjusted rates of receipt of mammography for African American and White women (1) in 2009; (2) in 2008 or 2009; and (3) in both 2008 and 2009. In 2009, 29% of African American women received a mammogram compared to 59% of White women with intellectual disabilities. Over the 2008e2009 period, 51% of African American women and 76% of White women received at least one mammogram. Over the 2008e2009 period, 11% of African American women and 43% of White women received a mammogram in both years. All differences were statistically significant. Table 2 presents the regression results. Controlling for age, living arrangement, urban/rural location, and impairment severity, White women were nearly five times as likely as African American women to have received mammography in 2009 (OR 5 4.55; p ! 0.01); three times as likely to have received a mammogram in either 2008 or 2009 as African American women (OR 5 3.04; p ! 0.05); and nearly six times as likely as African American women to have received mammography in both 2008 and 2009 (OR 5 5.35, p ! 0.05). We conducted sensitivity analyses to explore whether these results were robust, estimating a range of different models with various subsets of the sample, stratified by impairment severity, living arrangement, rural or urban geographic location. Across all of these analyses, African American women were markedly less likely to receive mammography than White women, regardless of model configuration.

Discussion While previous research has indicated significant health disparities for women with intellectual disabilities,30 little is known about racial differences in health care access

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Table 2 Odds ratios (95% confidence intervals) for receipt of mammography in last year (2009) and last 2 years (2008e 2009) Received in 2009 (n 5 88) Received in 2008 or 2009 (n 5 84) Received in both 2008 and 2009 (n 5 87) Variables

OR

95% CI

OR

95% CI

OR

95% CI

White Age Lives with family Lives alone/with partner Lives in rural location Impairment is severe

4.55** 1.04 1.40 0.81 0.37þ 1.38

[1.62, [0.97, [0.48, [0.13, [0.13, [0.29,

3.04* 1.00 0.77 0.21þ 0.64 1.48

[1.08, [0.93, [0.25, [0.03, [0.20, [0.30,

5.35* 1.00 0.38 0.43 0.22* 0.25

[1.33, [0.94, [0.06, [0.00, [0.05, [0.01,

12.82] 1.11] 4.10] 5.22] 1.09] 6.56]

8.54] 1.07] 2.35] 1.33] 2.01] 7.24]

28.42] 1.07] 1.71] 3.79] 0.80] 1.94]

Note. OR 5 odds ratio; CI 5 confidence interval. Reference groups: Black or African American, lives in formal residential setting, lives in urban area, and impairment is mild or moderate. þ p ! 0.10. *p ! 0.05. **p ! 0.01.

among this population. This study described mammography presents new evidence of significantly worse rates of mammography among African American women with intellectual disabilities compared to White women with intellectual disabilities. This marked racial disparity persisted even after controlling for a host of variables including age, living arrangement, urban or rural community, and severity of impairment. Limitations This sample of women was drawn from a larger study that is testing an intervention to promote cervical and breast cancer screening. The intervention’s target population is women with mild to moderate impairment severity. As such, the findings obtained here are probably not representative of the entire population of women with intellectual disabilities. Second, this sample of women is drawn from one Southeastern U.S. state and the sample size is modest (n 5 92). These findings may therefore have limited generalizability. However, we note that the women were drawn from a wide geographic area, and approximately the same portion lived in residential settings as women with intellectual disabilities nationally.26 Third, we are not able to verify the accuracy of the medical records or the abstraction forms completed by the medical practices. It is possible that there were errors in the records. However, there is no reason to believe that errors would be racially biased. Fourth, we were unable to examine mammography disparities for women who were Asian, Native American or Latina, due to sample size limitations. Exploring mammography receipt for these women is an important direction for future research. Finally, women in this sample are all engaged with the disability service system in some way, and receive residential, vocational, educational, and/or case management services. Investigating the extent of racial disparities in mammography for women who are unknown to the service system was beyond the scope of this study. Given the involvement of paid service professionals in the lives of these women, we suspect that the results obtained for this

sample are likely better than for women who are wholly unknown to the service system. Despite these limitations, the study has important strengths. First, the findings reported here are drawn from medical records and are therefore not compromised by recall bias or self-report bias. Second, this sample was drawn from a geographically dispersed area and included women from a variety of living arrangements, and rural or urban locations. Third, these women were not drawn from a clinical sample or from a single medical practice. Implications These findings indicate that interventions and public health campaigns that have been successful in reducing racial disparities in mammography receipt among women without disabilities31 have not reached African American women with intellectual disabilities. Interventions may be inaccessible for women with cognitive impairments or may not be administered in settings frequented by women with intellectual disabilities. In addition, there is some recent evidence indicating that the reduction in racial disparities among the nondisabled population are due to over reporting of procedures by African Americans.32 Since our study used medical record data instead of self or proxyreported data, our study may provide some evidence of racial disparities that persist for all women regardless of their disability status. These study findings provide some support for the Institutes of Medicine assertion that racial disparities are the product of factors at the individual, clinical encounter, and system levels.1 However, our sample was insured, and living in the same health care market, which suggests that health care provider factors are significant contributors to the disparities we observed. Policy and practice interventions are particularly warranted at these levels. First, state Medicaid and intellectual disabilities service agencies could use their licensing requirements, particularly for residential settings, to require disability service providers to support their women service recipients to

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obtain mammography according to clinical guidelines. We note that in the state in which this study occurred, residential service providers are not held accountable for ensuring that service recipients with intellectual disabilities receive mammography screening. In addition, case managers and other disability service providers are in unique positions to advocate for women to receive screenings. Discussions about when the woman may have been screened for breast cancer and clinical guidelines for the woman’s age should be included and required as part of yearly service planning meetings, variously termed person-centered planning, individual habilitation planning, or individual service planning by different states. These annual planning meetings, which are widely required by states as a condition of funding provided to disability service organizations, provide unique opportunities for caregivers and disability service professionals to review the women’s receipt of needed screenings, and determine a course of action to enable the women to receive such screenings. Insofar as other research shows women have great fear related to these procedures,33 service plans should include provisions to help women reduce their anxiety, and learn about the critical need for these procedures. All but one of the women in this study had health insurance, which indicates that a lack of insurance was not the key barrier to receipt of mammography within our sample. In the state in which these data were collected, state Medicaid policies permit beneficiaries to receive annual screening mammography, and reimbursement rates to physicians for Medicaid and Medicare are similar. State and federal Medicaid and federal Medicare policies should consider enhancing the reimbursement rates of health care providers who meet targets for achieving mammography screening for their vulnerable patients with intellectual disabilities. Practices could be audited for racial disparities, and reimbursement incentives or bonuses offered to those in which racial disparities in mammography screening are eliminated. Health promotion interventions aimed at African American women should include efforts to reach women with intellectual disabilities. Given the low screening rates observed in this study, it would appear breast cancer screening initiatives have not reached African American women with intellectual disabilities at the same rate as the nondisabled population. In addition, physicians and health care providers must be aware of this disparity and work to increase recommendations for mammography for African American women with intellectual disabilities. Finally, health care professionals must encourage and recommend screenings for women with intellectual disabilities. This encouragement must include adequate education and counseling of women about the exam, help preparing them prior to their test, and guidance in learning ways to reduce anxiety before and after the procedure. While the African American women in our study had the lowest rates of mammography receipt, rates were still low for White

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women. This finding suggests women with intellectual disabilities in general are not receiving mammography according to clinical guidelines established by the U. S. Preventive Services Task Force.

Conclusion This study offers evidence of racial disparities in the receipt of mammography among African American and White women with intellectual disabilities. Assertive policy measures are needed to improve mammography for African American women with intellectual disabilities. References 1. Smedley BD, Stith AY, Nelson AR. Unequal Treatment: Confronting Racial and Ethnic Disparities in Health Care. Washington, DC: The National Academies Press; 2002. 2. Paskett ED, Tatum C, Rushing J, et al. Racial differences in knowledge, attitudes, and cancer screening practices among a triracial rural population. Cancer. 2004;101(11):2650e2659. 3. Moy B, Park ER, Feibelmann S, Chiang S, Weissman JS. Barriers to repeat mammography: cultural perspectives of African-American, Asian, and Hispanic women. Psycho-Oncology. 2006;15:623e634. 4. Blanchard K, Colbert JA, Puri D, et al. Mammographic screening: patterns of use and estimated impact on breast carcinoma survival. Cancer. 2004;101(3):495e507. 5. National Center for Health Statistics. Health, United States, 2009: with Special Feature on Medical Technology. Hyattsville, MD: US Department of Health and Human Services; 2010. Report No.: 2010-1232. 6. Henley SJ, King JB, German RR, Richardson LC, Plescia M. Surveillance of screening-detected cancers (colon and rectum, breast, and cervix) e United States, 2004e2006. MMWR Surveill Summ. November 26, 2010;59(SS09):1e25. Available from: http://www.cdc.gov/mmwr/ preview/mmwrhtml/ss5909a1.htm. 7. American Cancer Society. Cancer Facts and Figures for African Americans 2011e2012. Atlanta: American Cancer Society; 2011. 8. Franzini L, Williams AF, Franklin J, Singletary SE, Theriault RL. Effects of race and socioeconomic status on survival of 1,332 black, Hispanic, and white women with breast cancer. Ann Surg Oncol. 1997;4(2):111e118. 9. Joslyn SA, West MM. Racial differences in breast carcinoma survival. Cancer. 2000;88(1):114e123. 10. DeLancey JOL, Thun MJ, Jemal A, Ward WM. Recent trends in Black-White disparities in cancer mortality. Cancer Epidemiol Biomarkers Prev. 2008;17:2908e2912. 11. DeSantis C, Siegel R, Brandi P, Jemal A. Breast cancer statistics, 2011. CA Cancer J Clin. 2011;61:409e418. 12. Patja K, Eero P, Iivanainen M. Cancer incidence among people with intellectual disability. J Intell Disabil Res. 2001;45(4):300e307. 13. Sullivan SG, Glasson EJ, Hussain R, et al. Breast cancer and the uptake of mammography screening services by women with intellectual disabilities. Prev Med. 2003;37:507e512. 14. Sullivan SG, Hussain R, Threlfall T, Bittles AH. The incidence of cancer in people with intellectual disabilities. Cancer Causes Control. 2004;15(10):1021e1025. 15. Hulka BS, Moorman PG. Breast cancer: hormones and other risk factors. Maturitas. 2001;38:103e116. 16. Van Schrojenstein Lantman-de Valk HMJ, Schupf N, Patja K. Reproductive and physical health. In: Walsh PN, Heller T, eds. Health of Women with Intellectual Disabilities. Osney Mead, Oxford: Wiley; 2002:22e40. 17. Wilkinson JE, Cerreto MC. Primary care for women with intellectual disabilities. J Am Board Fam Med. 2008;21(3):215e222.

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18. Havercamp SM, Scandlin D, Roth M. Health disparities among adults with developmental disabilities, adults with disabilities, and adults not reporting disability in North Carolina. Public Health Rep. 2004;119: 418e427. 19. Lewis MA, Lewis CE, Leake B, King BH, Lindemann R. The quality of health care for adults with developmental disabilities. Public Health Rep. 2002;117:174e184. 20. Parish SL, Saville AW. Women with cognitive limitations living in the community: evidence of disability-based disparities in health care. Ment Retard. 2006;44(4):249e259. 21. Wilkinson JE, Lauer E, Freund KM, Rosen AK. Determinants of mammography in women with intellectual disabilities. J Am Board Fam Med. 2011;24:693e703. 22. Parish SL, Rose RA, Luken K, Swaine JG, O’Hare L. Cancer screening knowledge changes: results from a randomized-control trial of women with developmental disabilities. Res Social Work Prac. 2012;22(1):43e53. 23. Brown AA, Gill CJ. New voices in women’s health: perceptions of women with intellectual and developmental disabilities. Intellect Dev Disabil. 2009;47(5):337e347. 24. McIlfatrick S, Taggart L, Truesdale-Kennedy M. Supporting women with intellectual disabilities to access breast cancer screening: a healthcare professional perspective. Eur J Cancer Care (Engl). 2011;20: 412e420. 25. U. S. Preventive Services Task Force. Screening for breast cancer: U. S. Preventive Services Task Force recommendation statement. Ann Intern Med. 2009;151(10):716e726.

26. National Core Indicators. Chart Generator 2008e2009. National Association of State Directors of Developmental Disabilities Services and Human Services Research Institute. [cited 2012 Apr 5]. Available from: http://www.nationalcoreindicators.org/charts/. 27. Swaine J, Parish SL, Luken K, Atkins L. Recruitment and consent of women with intellectual disabilities in a randomised control trial of a health promotion intervention. J Intell Disabil Res. 2011;55(5): 474e483. 28. U.S. Census Bureau. Census 2000 Urban and Rural Classification [Internet]. Available from:, http://www.census.gov/geo/www/ua/ua_ 2k.html [updated 2011 Jul13; cited 2011 Oct 25]. 29. Agresti A, Finley B. Statistical Methods for the Social Sciences. 4th ed. UpperSaddle River, N.J.: Pearson Prentice Hall; 2009. 30. Krahn GL, Hammond L, Turner A. A cascade of disparities: health and health care access for people with intellectual disabilities. Ment Retard Dev Disabil Res Rev. 2006;12:70e82. 31. Knowlden AP, Sharma M. Examining the effectiveness of interventions designed to increase mammography adherence among African American women. Am J Health Sci. 2011;2:29e38. 32. Njai R, Siegel PZ, Miller JW, Liao Y. Misclassification of survey responses and black-white disparity in mammography use, Behavioral Risk Factor Surveillance System, 1995e2006. Prev Chronic Dis. 2011;8(3):A59. Available from: http://www.cdc.gov/pcd/issues/2011/ may/10_0109.htm. 33. Iezzoni LI, McCarthy EP, Davis RB, Harri-David L, O’Day B. Use of screening and preventive services among women with disabilities. Am J Med Qual. 2001;16(4):135e144.