MP19-15 PATIENT-REPORTED BARRIERS TO OBTAINING GENETIC COUNSELING IN EARLY-ONSET RENAL CELL CARCINOMA (2019)

You have accessJournal of UrologyKidney Cancer: Epidemiology & Evaluation/Staging/Surveillance III (MP19)1 Apr 2019MP19-15 PATIENT-REPORTED BARRIERS TO OBTAINING GENETIC COUNSELING IN EARLY-ONSET RENAL CELL CARCINOMA Brady Miller*, Jason Flamiatos, Angela Tess, Sara Best, Sean Hedican, David F. Jarrard, Kyle A. Richards, Tracy M. Downs, Steven Nakada, and E. Jason Abel Brady Miller*Brady Miller* More articles by this author , Jason FlamiatosJason Flamiatos More articles by this author , Angela TessAngela Tess More articles by this author , Sara BestSara Best More articles by this author , Sean HedicanSean Hedican More articles by this author , David F. JarrardDavid F. Jarrard More articles by this author , Kyle A. RichardsKyle A. Richards More articles by this author , Tracy M. DownsTracy M. Downs More articles by this author , Steven NakadaSteven Nakada More articles by this author , and E. Jason AbelE. Jason Abel More articles by this author View All Author Informationhttps://doi.org/10.1097/01.JU.0000555504.94105.7dAboutPDF ToolsAdd to favoritesDownload CitationsTrack CitationsPermissionsReprints ShareFacebookLinked InTwitterEmail Abstract INTRODUCTION AND OBJECTIVES: The 2017 AUA Guidelines for localized renal cell cancer (RCC) recommend genetic counseling for patients who are diagnosed ≤46 years. The objective of this study was to evaluate barriers to receiving genetic counseling after surgery for early onset RCC. METHODS: Comprehensive clinical information was collected for consecutive RCC patients ≤46 years of age treated with partial or radical nephrectomy between 2011-2018. Hereditary RCC is routinely discussed postoperatively and genetic counseling is ordered via the electronic medical record. For patients who had referral but did not receive genetic counseling, a telephone survey was administered to identify reasons for not receiving genetic evaluation. RESULTS: Of 101 patients identified, 65 (64.3%) were referred for genetic counseling. Referral was associated with: receiving care after 2017 (90%, OR 15.8, 95% CI 2.6-95.1, p=0.003), individual provider (OR 4.1, 95% CI 1.2-13.3, p=0.02) and family history of RCC (OR 7.0, 95% CI 0.8-63.6,p=0.08). Other demographic and cancer-specific factors, including age, sex, tumor stage and grade were not associated with referral. Of 65 patients referred, 23 (35.3%) received genetic counseling, and 4 (17.4%) had genetic mutations associated with RCC. Demographic, cancer-specific factors, personal/family history of kidney cancer and referral by the primary surgeon were not statistically different for patients receiving genetic counseling. A telephone survey was administered to 42 patients who were referred for but did not receive genetic counseling, of which 31 (73.4%) participated. The most common reasons for not receiving genetic counseling was: it was not convenient (17, 54.8%), too expensive (5, 16.1%), do not see the benefit (5, 16.1%) or patient was not contacted after referral (4, 12.9%). Of survey respondents, most (88%) would be more willing to receive genetic counseling if it were offered at the same visit as their surgical follow up or if it was low or no cost, and most (91%) either had children or planned to have children. CONCLUSIONS: Approximately two thirds of early onset RCC patients did not receive genetic counseling despite provider recommendation. Barriers to obtaining genetic counseling identified were intervenable, such as convenience of scheduling, and not inherent patient demographic or clinical factors. Source of Funding: None Madison, WI© 2019 by American Urological Association Education and Research, Inc.FiguresReferencesRelatedDetails Volume 201Issue Supplement 4April 2019Page: e279-e280 Advertisement Copyright & Permissions© 2019 by American Urological Association Education and Research, Inc.MetricsAuthor Information Brady Miller* More articles by this author Jason Flamiatos More articles by this author Angela Tess More articles by this author Sara Best More articles by this author Sean Hedican More articles by this author David F. Jarrard More articles by this author Kyle A. Richards More articles by this author Tracy M. Downs More articles by this author Steven Nakada More articles by this author E. Jason Abel More articles by this author Expand All Advertisement PDF downloadLoading ...