Purpose : To better understand the processes of identifying and referring high-risk patients for genetic counseling and testing for familial cancer from the perspective of genetic counselors.
Methods : Genetic counseling providers from eight integrated health systems were surveyed. Data analyses involved computing frequencies of categorical responses and means of continuous responses.
Results : Twenty-eight individuals out of 40 invited responded to the survey (70%). Referrals for counseling/testing (89%) overwhelmingly came from providers (38% from oncologists), while10% were self-referrals. Forty-six percent reported that their institution had an official guideline for referral and counseling for familial cancer. Barriers that may prevent patients who are referred for counseling services from being seen included the following: genetic risk evaluation was not a priority for patients (72%), lack of insurance and concerns about insurability (52%), distance to appointments (48%), lack of patient and/or provider knowledge and understanding (36%), discouragement by family members (28%), and fear (20%). Attending meetings was the most frequently reported strategy (by 57%) to increase awareness among and referrals from providers; presentations were made to oncologists (43%), surgeons (36%), primary care or gynecologists (25%). More education for providers was the most frequently reported suggestion to improve understanding of the value of family history documentation and increasing referrals.
Conclusion : Our survey identified several areas in the identification and referral process for cancer genetic services where opportunities for improvement exist.