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

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.