Hospital-based traceback program for prior ovarian cancer patients results in minimal uptake of genetic counseling and testing

Objectives: Objective: To determine the feasibility of a hospital-based approach to implementation of a genetic testing traceback program for ovarian cancer patients Methods: The Division of Cancer Prevention and the Division of Cancer Control and Population Sciences, National Cancer Institute (NCI) recognized the opportunity lost by the lack of genetic counseling and/or testing (GC/T) for BRCA1 and BRCA2 in previously diagnosed women with ovarian cancer (OC). During a 2016 workshop, they coined the term ‘traceback’ to describe the concept of offering GC/T to these patients and families that should have been offered services previously. We identified traceback-eligible patients and patient-designated surrogates (emergency contacts, medical power-of-attorney designees, family members) using tumor registry and electronic medical record data. Eligible patients had histology-confirmed epithelial malignancies of ovarian, fallopian tube, or peritoneal origin. All living patients were sent a letter explaining the availability of GC/T and surrogates of deceased patients were called on the telephone. Outcomes of contact attempts were systematically recorded and statistically described. Results: We identified 176 presumed-living and 441 deceased trace-back-eligible OC patients diagnosed between 2006-2016. For living patients, 6% (n=11) of letters were returned without forwarding address and 1% (n=2) contacted our office upon receipt of the letter and scheduled genetic counseling visits. Telephone numbers but no other contact information details were available for at least one surrogate for 91% (n=401) of deceased patients. The most commonly listed primary surrogates were spouses (41%) followed by daughters (21%). Approximately 20% (n=.77) of contact attempts to primary surrogates have resulted in a phone conversation about the availability of GC/T. More than half (64%) have required more than one call. Of the primary surrogates successfully contacted, 40% have previously heard of GC/T for OC before, 28% have discussed GC/T with their healthcare providers, 9% had already had GC/T and 13% were interested in GC/T at this time. Phone numbers were invalid for 20% of primary contacts. Overall, hospital-based traceback resulted in GC/T for 2% of those patients and surrogates contacted. Conclusions: While feasible, telephone-based contact of patient-designated surrogates is time-intensive and results in minimal uptake of GC/T. To practically execute this type of outreach program, health systems should consider collection of alternative contact information details like email addresses for surrogates and should consider the development of family registries for future contact.