Why do breast cancer programs fail to refer patients to genetic counseling upon obtaining family history?

Abstract

1553 Background: Women with personal or family history suggestive of susceptibility to hereditary breast or ovarian cancer should be referred to genetic counseling (US Preventive Services Task Force, Ann Intern Med. 2005). Our goal is to examine whether this guideline is followed by breast cancer programs providing screening and treatment in a large urban area; and if not followed, why. Funded by Susan G. Komen for the Cure. Methods: Using the framework approach of qualitative research, we conducted interviews with 130 providers of breast cancer screening and treatment at 26 institutions in Chicago (18 community, 4 academic and 4 public hospitals). We interviewed radiologists, mammography technologists, nurses, surgeons, oncologists, internists, and patient navigators. Interviews were transcribed and coded; theme analysis was conducted; simple frequencies and Fisher's exact test were calculated. Results: While all 26 programs collect patient personal and family history, only one program has both a protocol for referral to genetic counseling and a genetic counseling service. All six interviewees from that program (6/130, 5%) report referring appropriate patients to genetic counseling, compared to none from other programs (p<0.0001). 90% of interviewees (118/130) did not perceive any role in raising patient awareness or referring them to genetic counseling. Among the 124 interviewees not referring to genetic counseling, 51 (41%) have genetic counseling available, but only 12% (6/51) of them view referring or making patients aware of genetic services as their responsibility; while none of the interviewees without genetic counseling services view this their responsibility (p<0.0001). None of the interviewees noted reimbursement of genetic counseling as a barrier to referral. Conclusions: The lack of accountability by care providers is a barrier to referring patients with personal or family history of breast or ovarian cancer to genetic counseling, even when the service is available. A comprehensive approach addressing access to genetic counseling, adoption of referral protocols and clear assignment of referral responsibilities is needed to ensure that women appropriately receive genetic assessment.