Abstract

Abstract Background: Lesbian, gay, bisexual, and transgender (LGBT) individuals experience health disparities in breast cancer screening related to multiple socioeconomic factors, including stigma and discrimination. Since 2001, the Avon Breast Health Outreach Program (Avon BHOP) has granted almost $60 million to 240+ organizations to promote breast cancer screening. Avon BHOP beneficiaries collect a standardized set of de-identified, self-reported client level health and demographic data to ensure that programs reach their target population. Prior to 2011, no data on client gender or sexual orientation were collected. Methods: From 2009–2010, the Avon BHOP conducted a review of the standard confidential client intake form (CIF), last revised in 2006. Based on stakeholder input, including the Avon Foundation for Women and Avon BHOP beneficiaries, the CIF was updated in 2011 to incorporate variables for gender and sexual orientation. Proposed revisions were presented to current beneficiaries in June 2010 for feedback. Although the CIF has historically included many sensitive elements such as race/ethnicity and income, several programs expressed concern that clients or program staff would be uncomfortable addressing questions on gender and sexual orientation in particular. In response, the Avon BHOP Coordinating Center provided standard language that programs could use to help ease the concerns of staff and clients that incorporated three key messages: 1) the same form is used for all clients and programs funded by the Avon BHOP to help ensure funds are reaching clients in need; 2) all responses are kept confidential; and 3) clients may skip any question they are not comfortable answering. Results: Preliminary CIF data for January-March 2011 were analyzed for 20,672 clients from 109 programs. Overall, 96.6% (n=19,966) indicated female gender; 0.5% (n=101) self-reported gender as follows: 75 male, 8 transgender, 12 “other”, and 6 “unknown”; and 2.9% (n=605) did not respond to this question. For sexual orientation, 77.7% (n=16,067) of clients selected “heterosexual”. Of the remaining 22.3% (n=4,606), 175 (0.8%) selected “lesbian, gay or bisexual”, 431 (2.1%) selected “other”, 1045 (5.1%) selected “unknown”, and 2,954 (14.3%) did not respond to this question. By program, the non-response rate ranged from 0% to 40.2% for gender, and from 0% to 81.9% for sexual orientation. Discussion: Avon BHOP programs were able to collect sensitive information on client gender and sexual orientation during the first three months during which this information was requested. Despite concerns expressed among staff, overall response rates were high and rates of “unknown” (which may indicate that a staff person did not ask a client to complete the question) were low. Beneficiaries receive a quarterly summary of their own CIF data, which allows program staff to review client responses and ensure that client needs are met in a culturally sensitive manner. The Avon BHOP is committed to supporting diversity among funded programs; requesting data on client gender and sexual orientation may help improve services for LGBT clients by giving them a voice and reducing stigma. Citation Information: Cancer Res 2011;71(24 Suppl):Abstract nr P1-11-14.

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