e16510 Background: In 2010 NCCN conducted a Risk Assessment and Genetic Counseling (RA/GC) study focused on the operational aspects of RA/GC programs and services at NCCN Member Institutions (MIs). The primary aims were benchmarking of RA/GC operations and practice patterns. Methods: A survey instrument was developed by NCCN staff in consultation with RA/GC leaders at NCCN MIs. The survey collected quantitative and descriptive data on RA/GC program organization, staffing, and patient volume and also included questions on patient referral, test disclosure, and program funding. Results: 19/21 (90%) NCCN MIs participated. The mean number of patients seen annually for 17 MIs reporting data was 872 (range 130 – 2,200). The mean number of patients seen annually per 1.0 genetic counseling full-time equivalent was 272 (range 152 – 422). RA/GC services are made available to patients by scheduled appointment only at 5 MIs (26%) versus by appointment or with on-call genetic counselors at 14 MIs (74%). However, 11/19 (58%) MIs reported the time between initial patient contact and appointment was greater than 2 weeks. Self-sufficient RA/GC program funding was consistently cited by survey respondents as one of the greatest challenges, with 18 MIs indicating that they require institutional support, whereas only 11 indicated that reimbursement from third-party payors contributed to funding. Pertaining to disclosure, respondents estimated that 48% of test results were disclosed to patients via telephone and 39% in-person. The remaining disclosures were made based on patient preference. Conclusions: The availability of on-call RA/GC resources at most NCCN MIs likely indicates an effort to increase the number of patients that receive RA/GC services, but based on times to first appointment, access remains an issue. The 2011 recommendations of the National Society of Genetic Counselors state that the disclosure of test results in-person is often very helpful. However, the percentage given by telephone remains substantial. Dissemination of RA/GC benchmark data and identification of best practices will promote enhanced operations and patient access at NCCN MIs.
ADDENDUM: Genetic counseling and testing for Alzheimer disease: joint practice guidelines of the American College of Medical Genetics and the National Society of Genetic Counselors
