Long‐term outcome and symptom improvement in patients with interstitial cystitis/bladder pain syndrome with or without regular follow‐up and treatment

AIMS: Interstitial cystitis/bladder pain syndrome (IC/BPS) is a chronic disease, which is difficult to treat. Patients usually seek for new therapies and might not follow-up regularly. This study investigated long-term symptom changes in patients with IC/BPS, especially in those who were lost to follow-up. METHODS: We enrolled patients with IC/BPS with a history of >5 years and having comprehensive medical records, baseline IC symptom index and IC problem index, O'Leary-Sant symptom score, and visual analog scale (VAS). A telephone interview was conducted to assess current symptoms with the same questionnaires. A 5-point scale (from -1 to 3) was used to grade current treatment outcomes. RESULTS: A total of 198 patients with IC/BPS with a mean age of 57.4 ± 12.2 years were included. At a mean follow-up duration of 16.6 ± 9.75 years, 12% of the patients were free of symptoms and 47% exhibited symptom improvement of more than 50%. Totally, 47 (23.7%) patients were lost to follow-up for >5 years, and 151 (76.3%) had a regular follow-up. The patients with IC/BPS who were not regularly followed up had no Hunner's lesion, and had a higher bladder volume (P = .023), higher urine flow (P = .019), and fewer comorbidities (P = .014) than those who had a regular follow-up. The number of treatment modalities was significantly less in the patients who were lost to follow-up (P = .037). CONCLUSIONS: About half of the patients with IC/BPS exhibited symptom improvement with time, with or without regular follow-up and receiving a new treatment.