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Hospital Based Traceback of Ovarian Cancer Patients: a Feasibility Study

Weinmann, Simone Marin
http://rave.ohiolink.edu/etdc/view?acc_num=osu1618873865426748

Abstract Details

2021, Master of Science, Ohio State University, Genetic Counseling.
Background: Ovarian carcinoma (OC) is the deadliest gynecologic malignancy and accounts for over 17,000 deaths per year in the United States. Approximately 20% of OC is associated with germline pathogenic variants in hereditary cancer genes. Despite increased awareness of OC, early detection methods do not exist and as such risk reduction for hereditary OC is dependent on surgical removal of the ovaries and fallopian tubes. Genetic counseling and testing (GC/T) uptake for ovarian cancer risk has been historically low, and as such a framework coined Traceback has been proposed by the National Cancer Institute to contact families who could potentially benefit from risk reduction strategies. Methods: We identified traceback-eligible patients and patient-designated surrogates (emergency contacts, family members) using tumor registry and electronic medical record data. 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. Surrogate attitudes and comments were recorded in free text form and common themes were tabulated. Results: We identified 161 presumed-living and 435 deceased traceback-eligible OC patients diagnosed between 2006-2016. For living patients, 5.5% (n=9) of letters were returned without forwarding address and 1% (n=2) contacted our office and scheduled genetic counseling visits. Telephone numbers were available for at least one surrogate for 91% (n=396) of deceased patients, with a total of 620 surrogates listed. The most commonly listed primary surrogates were spouses (32%) followed by daughters (24%). 25% (n=152) of contact attempts to primary surrogates resulted in a phone conversation about the availability of GC/T. Of the surrogates successfully contacted, 61% had previously heard of GC/T for OC, 28% have discussed GC/T with their healthcare providers, 9% had already had GC/T and 21% were interested in GC/T at this time, with 56% requesting more information. Of the 288 surrogates who qualified for genetic testing based on their stated relationship status, 90 were successfully contacted, 12 of which opted for GC/T (9%). Attempted phone contact of all 620 surrogates required 29.5 hours and total time expenditure for hospital based traceback encompassing 10 years (2006-2016) of ovarian cancer diagnoses was 108.7 hours. Common surrogate comments during calls included thankfulness, lack of interest, and confusion. Conclusions: NCI workshop participants proposed several possible implementation strategies to traceback and explored the potential ethical and legal challenges that may arise, but practical outcomes have not been described. Our study shows that 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 such as email addresses for surrogates and the participation of patients in registries for future contact. Our study also underscores the importance of timely genetic counseling and testing while patients are in active cancer care.
Leigha Senter, MS (Advisor)
Kevin Sweet, MS (Committee Member)
Casey Cosgrove, MD (Committee Member)
46 p.
Genetics
Ovarian cancer; Traceback; recontact; genetics

Recommended Citations

Citations

  • Weinmann, S. M. (2021). Hospital Based Traceback of Ovarian Cancer Patients: a Feasibility Study [Master's thesis, Ohio State University]. OhioLINK Electronic Theses and Dissertations Center. http://rave.ohiolink.edu/etdc/view?acc_num=osu1618873865426748

    APA Style (7th edition)

  • Weinmann, Simone. Hospital Based Traceback of Ovarian Cancer Patients: a Feasibility Study. 2021. Ohio State University, Master's thesis. OhioLINK Electronic Theses and Dissertations Center, http://rave.ohiolink.edu/etdc/view?acc_num=osu1618873865426748.

    MLA Style (8th edition)

  • Weinmann, Simone. "Hospital Based Traceback of Ovarian Cancer Patients: a Feasibility Study." Master's thesis, Ohio State University, 2021. http://rave.ohiolink.edu/etdc/view?acc_num=osu1618873865426748

    Chicago Manual of Style (17th edition)

osu1618873865426748
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This open access ETD is published by The Ohio State University and OhioLINK.