PCN373 - UNDERSTANDING PATIENT PERSPECTIVES OF RENAL CELL CARCINOMA USING SOCIAL MEDIA: A QUALITATIVE ANALYSIS

Abstract

Treatment with tyrosine kinase inhibitors (TKI) is used frequently in 1st line metastatic renal cell carcinoma (RCC). Patient perspectives expressed on social media may help to better understand the lived experience of RCC and 1st line TKI treatment. Posts were extracted from a random selection of users on four publically available patient forums; one UK-based (Macmillan) and three US-based (Cancer Network, Cancer Compass, Daily Strength). Users were self-reported patients or caregivers of patients with stage IV RCC receiving 1st line TKI. Extracted posts were read into the RQDA qualitative package for R statistical software. Using thematic analysis, themes were identified inductively under either positive or negative impacts of treatment. A total of 2713 posts from 104 users were extracted and included in the analysis (UK site= 908 posts [29 users]; US sites= 1,805 posts [75 users]). Mentions corresponding to a negative impact of treatment were >3 times more common than to a positive impact (1246 mentions [96 users] vs. 382 [71]). Negative impacts were grouped under five themes (adverse events [AE], disease management, quality of life [QoL], disease status, and impact on family), and positive impacts under two themes (clinical benefit and QoL). The most commonly mentioned negative impact related to AE’s, and specifically involved pain/fatigue or gastrointestinal events (nausea/vomiting). There were almost twice as many negative mentions relating to QoL than positive (192 [53] vs. 109 [34]). These centred on emotional impacts (e.g., helplessness), work/productivity loss, and financial burden, although the extent to which negative impacts were specific to treatment vs. disease could not be determined. Little difference was observed in themes between UK- and US-based forums. The experience of RCC patients conveyed on social media suggests there is high unmet need associated with 1st line TKIs, with patients frequently expressing concerns related to AE’s and poor QoL.