Discrete mathematical network analysis bridging clinical vocabulary and patient discourse in interstitial cystitis/bladder pain syndrome online communications

Abstract

Abstract Interstitial cystitis/bladder pain syndrome is a chronic condition involving pelvic pain and urinary symptoms. A three-stage analytical framework examined the correspondence between vocabulary from validated clinical questionnaires and language used in patient discussions on social media. Stage 1 identified 19 symptom-related terms from three questionnaires, all consistent with international diagnostic criteria. Stage 2 analyzed over 500,000 words from online discussions, detecting 73.7% of these terms and revealing a central “pain–urgency–voiding” triad in patient discourse. Stage 3 mapped strong symptom–site links, including burning–urethra and pain–abdomen, which may indicate underrecognized comorbidities. Clinical terms occupied central positions in the discourse network and showed greater structural importance than general vocabulary. Findings highlight differences between clinical terminology and patient-preferred language, suggesting strategies to improve assessment tools, address terminology gaps, and enhance patient-centered care. The approach is adaptable to other chronic conditions, supporting integration of real-world patient expression into clinical practice.