OBJECTIVES: To gain insights into patient/caregiver experience of non-muscle invasive bladder cancer (NMIBC) and its treatments (e.g., intra-vesical Bacillus Calmette-Guerin [BCG]/cystectomy) using social media (SM) data.

METHODS: Web-based searches identified SM data from 3 sources: the Fight Bladder Cancer website, YouTube, Reddit. English-language SM posts shared by adult patients or caregivers were reviewed if related to NMIBC disease and treatments. SM data were analyzed thematically.

RESULTS: Of 638 SM posts identified, 45 met the review criteria (20 videos, 13 blog/forum posts, 12 comments) and were shared by 38 contributors (31 patients; 7 caregivers). 21 (55%) contributors discussed symptoms including hematuria, urinary urgency, dysuria in relation to their NMIBC. Contributors discussed the impact NMIBC had on patients’ emotional/psychological-well-being (n=21; 55%), relationships (n=10;26%), daily life (n=7;18%), and work (n=6;16%). All 7 caregivers discussed impacts of caring for NMIBC patients: fear, stress, helplessness, low-mood, worry, feelings of loss, fatigue, and intimacy concerns. 32 (84%) contributors reported ≥1 NMIBC-related treatment experiences: cystoscopy (n=25;66%), BCG (n=23;61%), TURBT (n=21;55%), chemotherapy (n=9;24%), and cystectomy (n=8;21%). Few contributors (n=5, 13%) reported BCG treatment length which ranged from 6 weeks to 2 years. 8 (21%) contributors noted they or family member were in remission, and 5 patients noted ≥1 recurrence. 21 (55%) contributors commented on the negative impacts of treatments related to side effects, discomfort, inconveniences, work productivity, and emotional, physical and financial burdens.

CONCLUSIONS: SM data related to disease and treatment provide an opportunity for patient/caregiver voice to be heard. This research revealed their candid feedback on the burden and unmet needs of NMIBC and its treatments. Unsolicited SM posts from patients/caregivers may not be generalizable, but qualitative analysis of SM data can inform future study design to examine unmet needs and patient preferences. Guidance on SM research should be developed to increase methodology consistency across studies.