To understand the availability and content of patient support groups on social media platforms.
Five prevalent benign, urologic conditions affecting adult women were selected for analysis. Facebook support groups for these conditions were identified. Groups specific to one urologic condition and with at least 400 members were included, and groups for pediatric and malignant conditions were excluded. Each support group was analyzed for member count, posts per month, and period of activity. The 100 most recent posts in the largest support groups were manually reviewed and further categorized into content subsections.
A total number of 56 Facebook support groups were identified that satisfied the inclusion/exclusion criteria. Interstitial cystitis (IC) had 25 groups (68 466 members; 4825 posts), pelvic organ prolapse (POP) had 14 groups (72 342; 3067), UTI had nine groups (36 414; 3204), overactive bladder and/or urinary incontinence (OAB/UI) had seven groups (8246; 306), urinary retention had one group (1168; 118). Across all groups, post content was predominantly informational support (77.6%). Remaining post content was both informational and emotional support (10.0%), emotional support only (7.6%), or unrelated to either informational or emotional support (4.8%).
Individuals with benign urologic conditions are utilizing social media support groups predominantly to seek and share informational support from patient peers. The number of existing groups as well as the level of activity and number of members within individual support groups varies significantly between different urologic conditions. This suggests that there is an unmet need for accessible informational content for patients who suffer with benign urological conditions.
Neurourology and urodynamics. 2023 Sep 13 [Epub ahead of print]
Omar K Farah, Connie N Wang, Doreen E Chung
Columbia University Vagelos College of Physicians and Surgeons, New York, New York, USA., Department of Urology, Columbia University Irving Medical Center, New York, New York, USA.