Experiences of genetic counselors in referring young and metastatic breast cancer patients to support services: A needs assessment

Abstract

ObjectiveConduct a needs assessment to explore the experiences, barriers, and needs of genetic counselors (GCs), who counsel and refer young and metastatic breast cancer (BC) patients to support services, in order to develop resources to address any noticeable gaps. MethodsGCs providing care to BC patients were eligible to complete the survey. Support services were defined as resources to address patient-centered healthcare, emotional, and quality-of-life needs. ResultsMost participants (n = 117) reported familiarity with cancer prevention services (93%); fewer were familiar with services secondary to a BC diagnosis (e.g., fatigue=16% and sexual health=24%). The volume of GCs indicating familiarity with support services increased significantly as work experience increased for seven services. Many (>50%) never referred patients to most (9/12) support services, excluding cancer prevention, mental health, and financial issues. Open-ended responses highlighted that GCs considered referrals to be outside their scope of practice or that healthcare systems prevent GCs from making referrals. ConclusionGCs may benefit from curated resources and materials, especially for support services secondary to a BC diagnosis, to better support their patients. Practical implicationsCollaboration of GCs with other health professionals through integrative care programs may decrease burdens to accessing support services.