Barriers and Facilitators for Utilization of Genetic Counseling and Risk Assessment Services in Young Female Breast Cancer Survivors

Introduction. Women diagnosed with breast cancer at a young age are more likely to carry a cancer predisposing genetic mutation. Per the current NCCN recommendations, women diagnosed under age 50 should be referred to cancer genetic counseling for further risk evaluation. This study seeks to assess patient-reported barriers and facilitators to receiving genetic counseling and risk assessment among a community-based population of young breast cancer survivors (YBCS). Methods. Through the Michigan Cancer Surveillance Program, a state-based cancer registry, 488 women diagnosed with breast cancer before age 50 in 2006-2007 were identified. They received a mail survey regarding family history and facilitators and barriers to receiving genetic counseling and risk assessment. Results. Responses were received from 289 women (59.2%). One hundred twenty-two (42.2%) reported having received cancer genetic counseling. The most frequent reason identified for receiving services was to benefit their family's future. The top reasons for not attending were “no one recommended it” and “medical insurance coverage issues.” Discussion. This study is the first published report using a state cancer registry to determine facilitators and barriers to receiving genetic counseling and risk assessment among YBCS. These findings demonstrate the need for additional awareness and education about appropriate indications for genetic services. 1. Introduction Breast cancer diagnosed at a young age is an indication of a higher likelihood for an inherited cancer syndrome, such as hereditary breast and/or ovarian cancer syndrome (HBOC) or rarer genetic conditions such as Cowden syndrome and Li-Fraumeni syndrome [1–3]. According to the 2011 National Comprehensive Cancer Network (NCCN) Guidelines entitled “Genetic/Familial High-Risk Assessment: Breast and Ovarian,” women diagnosed with breast cancer prior to age 50 should be referred for further risk assessment, genetic counseling, and possible genetic testing [3]. Individuals diagnosed with breast cancer prior to age 50 are commonly referred to as young breast cancer survivors (YBCS) [4]. YBCS remain an understudied survivor population who have unique needs and challenges compared to the traditional cancer survivors because of young ages at diagnosis and associated family and societal roles [5, 6]. Even less is known about factors motivating this young population to attend a familial/high risk genetic counseling clinic. According to the recent cancer genetic counseling recommendations published by the National Society of Genetic Counselors