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BACKGROUND Patients use online communities to give and receive emotional support and health information. Little is known about the response of online patient communities to dissemination of major research results. OBJECTIVE We aimed to characterize and understand the attitudes of an online kidney cancer community, Smart Patients (https://www.smartpatients.com), before and after the presentation of results of the CARMENA trial (June 3, 2018), a trial examining the role of nephrectomy in metastatic renal cell carcinoma (RCC). METHODS We analyzed de-identified posts from the Smart Patients kidney cancer online community between May 1, 2018 and July 1, 2018 that related to nephrectomy and/or CARMENA. Smart Patients staff administered two polls (May 29 and June 11) to ask members if and why they would recommend nephrectomy as a treatment for metastatic kidney cancer. Narrative content was independently coded by all investigators for thematic analysis. RESULTS Most members were supportive of nephrectomy both prior to (140 members, 77%) and following (131 members, 68%) the CARMENA presentation. The majority (76%) of the 102 individuals who completed both polls did not change their opinion about nephrectomy after presentation of the results. Qualitative analysis identified several recurring themes in support of nephrectomy including the emotional benefit of feeling the primary tumor was ‘gone,’ perceived favorable biological impact of tumor debulking, positive personal experience with surgery, and reduced potential for additional metastases. CONCLUSIONS In an online kidney cancer community, there was brisk activity following high-profile research reflecting a high level of patient engagement and familiarity with the trial. Most members continued to support nephrectomy and reported both biological and psychological benefits to surgery despite the trial results suggesting that forgoing surgery leads to noninferior outcomes. CLINICALTRIAL N/A |
