Hospital-Based Ovarian Cancer Traceback Program Yields Minimal Increase in Genetic Counseling and Testing

A Traceback program that contacted patients with ovarian cancer or surrogates of those who were deceased via letters and telephone calls was found to be time intensive and resulted in a minimal increase in genetic counseling and testing, according to a study published in Gynecologic Oncology.

Of 598 traceback-eligible patients with ovarian cancer and surrogates, 2 living patients who were contacted via letter called to schedule an appointment. Among the surrogates, successful contact was achieved in 25% of phone calls, 14 of whom underwent genetic counseling. Of the 14 patients, 10 had genetic testing, and 5 went through with sample collection. In total, 58% of surrogates reported a positive experience to contact, but 42% reported having a negative experience.

“Our data show that institution-driven Traceback results in minimal uptake of genetic counseling and testing and underscores the importance of including genetic counseling and testing while patients are in active treatment. Through Traceback, of the 451 [National Comprehensive Cancer Network] guideline-eligible people for genetic counseling and testing (163 patients and 288 first- and second-degree relatives via surrogates), only 14 (3%) scheduled a genetic counseling appointment,” investigators of the study wrote.

A total of 1053 prior patients with ovarian cancer were identified, 20 of whom were excluded due to having non-epithelial ovarian histology or incarceration status. Investigators then identified 598 patients who had previous genetic counseling or testing, of whom 163 were presumed to be alive and 435 were deceased. Of the 435 patients who were deceased, 396 had surrogates listed and 620 were contacted via phone.

The majority of patients who hadn’t received genetic counseling or testing were White (93%). Most patients had an ovarian malignancy (83%) and almost half had high grade serous histology (44%). Most patients with ovarian cancer did not have genetic counseling or testing when they were diagnosed between 2006 and 2012 (80%).

Investigators were able to contact 152 surrogates, but the most common call outcomes were no answer or no voicemail, and leaving a voicemail. Successful contact with spouses or significant others occurred 18% of the time. In 2016, 64% of all contact was successful compared with other diagnosis years, including 23% in 2006; the difference was statistically significant (P <.05).

A total of 13% of surrogates reported having received previous genetic testing, most of whom were daughters or sisters of the original patient. Twelve surrogates scheduled an appointment for genetic counseling, 8 of whom pursued testing and 3 returned their saliva kits.

To launch the database, 60 hours plus 3 additional hours to mail letters was required. Successful contact phone calls lasted an average of 5:04 minutes and 29.5 hours were spent attempting to reach surrogates by phone; of this, 12.2 hours of phone calls were successful. Six minutes were set aside for email or mail follow-up surrogates who needed more information.

Call notes described 9 patients being wary of unprompted phone calls and 10 hung up during the initial introduction. Additionally, 14 patients were confused over initial contact. Negative responses were prevalent in 53% of spouses or significant others. Daughters had the most positive responses at 82% (P <.05).

“[Patients with ovarian cancer] are subject to high rates of lethality, and so recontact of these patients will often be contingent on reaching surrogates. It is currently undetermined if other methods of contact would prove more successful (MyChart, email), and as such, this study underscores the importance of providing genetic counseling and testing services while patients are in active treatment,” the investigators concluded.

Reference

Weinmann S, Phillips S, Sweet K, Cosgrove CM, Senter L. Hospital-based ovarian cancer patient traceback program results in minimal genetic testing uptake. Gynecol Oncol. 2022;164(3):615-621. doi:10.1016/j.ygyno.2021.12.027