OBJECTIVES

: Treatment with tyrosine kinase inhibitors (TKI) is used frequently in 1^st line metastatic renal cell carcinoma (RCC). Patient perspectives expressed on social media may help to better understand the lived experience of RCC and 1^st line TKI treatment.

METHODS

: 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 1^st 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.

RESULTS

: 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.

CONCLUSIONS

: The experience of RCC patients conveyed on social media suggests there is high unmet need associated with 1^st line TKIs, with patients frequently expressing concerns related to AE’s and poor QoL.