Abstract

Objectives: The main aim of this study is to characterise the humanistic burden of bladder pain syndrome (BPS) on patients within the United Kingdom and to estimate the key healthcare resource usage and cost of treating these patients. Method: An online survey was administered through two charities. Respondents were asked questions on BPS diagnosis, socio-demographics and health-related quality of life using the O’Leary-Sant Interstitial Cystitis Symptom Index (ICSI) and Problem Index (ICPI), the Pelvic Pain and Urinary/Frequency (PUF) and the EQ-5D questionnaires. Healthcare resource and therapy use, for the previous 6 months, were recorded and used to calculate economic burden. Results: A total of 252 patients completed the survey. Mean ICSI ICPI scores were 12.6 and 11.0, respectively, indicating severe symptoms. Mean PUF score was 21.2, indicating poor health status and a high number of BPS-related symptoms and problems. Mean EQ-5D utility score was 0.541. In the previous 6 months, 172 (68%) saw their general practitioner (GP) and 80 (32%) a primary care nurse, and 165 (65%) had one or more outpatient visits, due to their BPS. Conclusion: This survey adds to our current understanding of BPS in the United Kingdom, highlighting that patients with BPS have poor health-related quality of life and incur high resource use. Level of evidence: Not applicable

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