Abstract B32: Utilization and outcomes of cancer genetics referrals at a community cancer program
Authors: Akindele Ruth N. , Rana Huma Q. , Cochrane Sarah R. , Svoboda Ludmila A. , Lathan Christopher S. 
Published: February 2019

The majority of research on cancer genetic counseling and testing has been conducted in academic medical centers and among predominantly Caucasian cohorts. Unfortunately, underserved and minority populations who have a disproportionate burden of cancer have, historically, had limited access to and poor utilization of these services despite proven benefits of cancer risk reduction in high-risk individuals. Based on a unique co-location model that addresses this disparity gap, the Dana-Farber Cancer Institute (DFCI)'s Cancer Care Equity Program (CCEP) added a genetics arm to its Community Cancer Program (CCP), housed in a neighborhood Federally Qualified Community Health Center (FQHC) in 2013. The aim of this study was to determine clinic utilization rates, uptake, and outcomes of genetic evaluations as well as to describe the barriers to obtaining genetic testing among patients referred to the CCP.

Methods: The intervention cohort consisted of patients referred to the CCP by their primary care providers (PCP) for cancer genetics counseling and testing between August 2013 and April 2017. A geneticist and a genetic counselor from DFCI's Cancer Risk and Prevention Program provided risk assessment and counseling according to the National Comprehensive Cancer Network (NCCN) guidelines. Prospective data approved by the IRB were collected on a secured REDcap database that was designed for the CCEP. Information including attendance at clinic, patient demographics, personal and family history of cancer or familial mutation, previous genetic testing for cancer, recommendation for genetic testing, uptake, and results were extracted and analyzed descriptively (JMP Pro version 12, SAS Institute Inc., Cary, NC).

Results: Seventy out of 118 patients referred by PCPs attended clinic, indicating a no-show rate of 41%. Of the 70, 62 (89%) consented to research. The mean age of the study population was 43 (SD±11.6) years and 87% were women. More than half of the participants (57%) were Blacks/African Americans (Non-Hispanic-31% and Hispanic-26%), 32% were Whites (Non-Hispanic-13% and Hispanic-19%), and 8% were other races. Interpreter services, mainly Spanish, were provided for 32% of participants. The majority (76%) had Medicaid insurance, 8% had Medicare,13% had private insurance, and 3% had health safety net/free care. While not mutually exclusive, 66% of participants reported a family history of breast cancer, 32% ovarian cancer, 23% colorectal cancer, and 23% other cancers. There were two (3%) participants with a personal history of cancer, two (3%) with a presence of familial mutation among family members (BRCA 1/2), and two (3%) with prior genetic testing. Of the two who had prior testing, one had a familial mutation (APC). Overall, 43 (69%) participants were recommended for genetic testing. The most frequent reason for non-recommendation was that there was a better testing candidate in the family (53%). Another 21% were asked to clarify their family history before completing cancer risk assessment. Of the 43 who were recommended for testing, 32(74%) completed testing with nearly all (91%) testing for multigene panels. Lack of insurance coverage was the most frequent (73%) reason for not undergoing a test. Among those who completed testing, a pathogenic mutation (MUTYH) was identified in one participant (3%), while 13 (39%) had variants of unknown significance (VUS) and 18 (59%) had no mutations identified.

Conclusions: Our findings highlight the need for increased knowledge of family history and utilization of cancer genetic services among underserved and minority populations. Additionally, efforts should be made to improve insurance coverage for genetic testing in high-risk underserved individuals. Further research on the clinical significance of variants of uncertain significance identified in ethnic minority populations is also advised.

Citation Format: Ruth N. Akindele, Huma Q. Rana, Sarah R. Cochrane, Ludmila A. Svoboda, Christopher S. Lathan. Utilization and outcomes of cancer genetics referrals at a community cancer program [abstract]. In: Proceedings of the Tenth AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2017 Sep 25-28; Atlanta, GA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2018;27(7 Suppl):Abstract nr B32.