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.

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.

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).

About half of the patients with IC/BPS exhibited symptom improvement with time, with or without regular follow-up and receiving a new treatment.

Neurourology and urodynamics. 2019 Jul 16 [Epub ahead of print]

Hui-Ling Yeh, Jia-Fong Jhang, Yuh-Chen Kuo, Hann-Chorng Kuo

Department of Nursing, Hualien Tzu Chi General Hospital, Buddhist Tzu Chi Medical Foundation, Tzu Chi University, Hualien, Taiwan., Department of Urology, Hualien Tzu Chi General Hospital, Buddhist Tzu Chi Medical Foundation, Tzu Chi University, Hualien, Taiwan., Department of Urology, Yang Ming Hospital, Taipei, Taiwan., Department of Urology, Hualien Tzu Chi Hospital, Buddhist Tzu Chi Medical Foundation, Tzu Chi University, Hualien, Taiwan.

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