As a chronic disease, interstitial cystitis/bladder pain syndrome (IC/BPS) requires long-term follow-up and presents therapeutic challenges for affected women and their providers. To better understand patient experiences during treatment, Hassani et al. conducted a qualitative study with five focus groups.

Each group was moderated by a psychologist, and women were encouraged to discuss several aspects of their disease, including provider-patient interactions and treatment experiences. Twenty-one women with a median age of 42 years participated in this trial. The majority of women identified as white, had a post-college education, and had only tried first- and second-line treatment before. Five main topics were developed during group discussions: interest in self-management of symptoms, access to care, interactions with providers, desire for treatments supported by evidence, and desire to minimize side effects.

Women with IC/PBS strongly expressed the need for expert providers who are familiar with IC/BPS, who are empathic towards their patients, and who provide structured treatment plans for self-management of symptoms (e.g., fluid and diet modification, stress management, and rescue medication). They further preferred evidence-based treatment options over empiric therapies, and they expressed the wish to keep prescription medication to a minimum.

Even though results from this study cannot be generalized to all patients with IC/BPS, they nevertheless provide us with a relevant insight into patients’ perceptions and desires. Acknowledgement of these can strengthen the patient-provider relationship and improve adherence to treatment. Symptoms of IC/BPS should be taken seriously by any provider, and patients should be referred to (urogynecology) experts.