Patient experience and understanding of genetic testing in ovarian cancer

Abstract

<h3>Objectives:</h3> New advances in ovarian cancer (OC) treatment have solidified the importance of genetic testing in the management of ovarian cancer. As part of a larger quality improvement project aimed to increase somatic tumor testing in the upfront setting, we aimed to understand the OC patient experience with genetic testing through qualitative research methodology. <h3>Methods:</h3> We identified 23 patients who underwent surgery and adjuvant chemotherapy for advanced OC from January 2019 - January 2020 at a large volume single institution. Patients participated in a semi-structured phone interview exploring their experience with both germline and somatic testing for ovarian cancer and their understanding of the difference in testing, why it is performed, and the relevance to their care. The interviews were audio-recorded and transcribed verbatim and were analyzed by an independent reviewer with expertise in qualitative research using a two-stage process. First, a <i>deductive content analysis</i> provided a comprehensive overview of participant responses to the interview questions. Several new questions emerging from the content analysis then guided a second stage of <i>thematic analysis</i> to provide a more fine-grained understanding of key factors influencing patients' experience with and knowledge of genetic testing. <h3>Results:</h3> All 23 patients underwent genetic counseling, germline testing and somatic testing, 22/23 recalled provider education regarding genetic testing and 20/23 recalled seeing a genetics provider. Most patients (22/23) voiced understanding that test results would have implications for family members and their treatment, though two-thirds of patients (15/23) did not have a good understanding of available genetic tests for ovarian cancer and only 4 patients reported being aware of germline or somatic testing. Of the 23 patients, only 2 patients stated they received germline and/or somatic testing, 6 said testing had not been performed and 15 did not know if either had been performed. During the thematic analysis, several themes surrounding patient experience with and knowledge of genetic testing emerged from the interviews; patient passivity during medical consultation, patient desire to understand more regarding their diagnosis and low sense of entitlement (Table). <h3>Conclusions:</h3> We observed that patients appear to have a weak understanding of genetic testing for ovarian cancer. These data offer questions to understand patient wishes regarding genetics education and opportunities for patient care improvement. This data ultimately culminates in the question of why do patients not know much about genetic testing for ovarian cancer and subsequently does this lack of understanding pose a problem for the quality of patient care.