Living With and Managing Uncomplicated Urinary Tract Infection: Mixed Methods Analysis of Patient Insights From Social Media.

Background: Uncomplicated urinary tract infections (uUTIs) affect more than half of women in their lifetime and can impact on quality of life. We analyzed social media posts discussing uUTIs to gather insights into the patient experience, including aspects of their disease management journey and associated opinions and concerns.

Objective: This study aims to gather patient experience insights by analyzing social media posts that discussed uUTI.

Methods: A search string ("urinary tract infection" [UTI] or "bladder infection" or "cystitis" or "UTI" not "interstitial cystitis") was used to identify posts from public blogs and patient forums (June 2021 to June 2023). Posts were excluded if they were not written in English or discussed complicated UTI (posts that mentioned "pregnancy" or "pregnant" or "trimester" or "catheter" or "interstitial"). Posts were limited to publicly available sources and anonymized. The primary objective was to gather patient perspectives on key elements of the uUTI experience, including health care professional (HCP) interactions, diagnosis, treatment, and recurrence.

Results: In total, more than 42,000 unique posts were identified (mostly from reddit.com; 29,506/42,265, 70%) and >3600 posts were analyzed. Posts were most commonly from users in the United States (6707/11,180, 60%), the United Kingdom (2261/11,180, 20%), Canada (509/11,180, 5%), Germany (356/11,180, 3%), or India (320/11,180, 3%). Six main themes were identified: symptom awareness and information seeking, HCP interactions, diagnosis and management challenges, management with antibiotics, self-management, and challenges with recurrent UTI. Most posts highlighted the importance of seeking professional medical advice, while some patients raised concerns regarding their HCP interactions and lack of shared decision-making. Patients searched for advice and guidance on the web prior to consulting an HCP, described their symptoms, and discussed lifestyle adjustments. Most patients tried self-management and shared their experiences with nonprescribed treatment options. There was general agreement among posts that antibiotics are necessary to cure UTIs and prevent associated complications.

Conclusions: Social media posts provide valuable insight into the experiences and opinions of patients with uUTIs in Canada, Germany, India, the United Kingdom, and the United States. The insights from this study provide a more complete picture of patient behaviors and highlight the potential for HCP and patient education, as well as better communication through shared decision-making to improve care.