Abstract

You have accessJournal of UrologyKidney Cancer: Advanced (including Drug Therapy) I (MP14)1 Apr 2020MP14-17 UNDERREPORTING OF SIDE EFFECTS IN SYSTEMIC THERAPY FOR RENAL CELL CARCINOMA Dena Battle*, W. Kimryn Rathmell, Cristiane Bergerot, Pavlos Msaouel, Eric Jonasch, Daniel George, Tian Zhang, and Michael Staehler Dena Battle*Dena Battle* More articles by this author , W. Kimryn RathmellW. Kimryn Rathmell More articles by this author , Cristiane BergerotCristiane Bergerot More articles by this author , Pavlos MsaouelPavlos Msaouel More articles by this author , Eric JonaschEric Jonasch More articles by this author , Daniel GeorgeDaniel George More articles by this author , Tian ZhangTian Zhang More articles by this author , and Michael StaehlerMichael Staehler More articles by this author View All Author Informationhttps://doi.org/10.1097/JU.0000000000000839.017AboutPDF ToolsAdd to favoritesDownload CitationsTrack CitationsPermissionsReprints ShareFacebookLinked InTwitterEmail Abstract INTRODUCTION AND OBJECTIVE: New treatments in metastatic Renal Cell Carcinoma (RCC) have dramatically changed the landscape for patients, however they have also resulted in challenges related to new and unexpected side effects. Maximizing outcomes for new therapies requires effective communication between patients and providers to avoid unnecessary dose reductions and treatment discontinuation. Little is known about side effects outside clinical trials. We sought to gather independent data from the largest online patient community to understand patient reporting. METHODS: The KCCure online survey was performed between August 1st and September 30th 2019. Out of 1,136 patients responding 411 patients actually were on systemic therapy and were included in this analysis. RESULTS: Although 50% are confident their medical oncologist will offer help for side effects 20% are worried that their dose might be reduced, or they might be taken off therapy. Six percent of patients said they never talk about their side effects. Only 3% of patients would choose a therapy because it has a low risk of toxicity. 51% believe the best advice on managing treatment related side effects is provided by their medical oncologist, but 40% seek advice from online patient communities and advocacy organizations (35%). Only 8% use manufacturer support webs sites. 13% had never had any concomitant medication prescribed to help treat their side effects. 18 percent of patients reported using marijuana and 26 percent of patients reported using CBD oil. CONCLUSIONS: Patients are willing to accept side effects to support efficacy. Clinically relevant underreporting of side effects leads to a low rate of support from therapeutic stakeholders. Online communities are a relevant source of information for patients. Impaired sexual function should be treated accordingly and investigated further. Source of Funding: None © 2020 by American Urological Association Education and Research, Inc.FiguresReferencesRelatedDetails Volume 203Issue Supplement 4April 2020Page: e202-e202 Advertisement Copyright & Permissions© 2020 by American Urological Association Education and Research, Inc.MetricsAuthor Information Dena Battle* More articles by this author W. Kimryn Rathmell More articles by this author Cristiane Bergerot More articles by this author Pavlos Msaouel More articles by this author Eric Jonasch More articles by this author Daniel George More articles by this author Tian Zhang More articles by this author Michael Staehler More articles by this author Expand All Advertisement PDF downloadLoading ...

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