The Interstitial Cystitis/Bladder Pain Syndrome Clinical Picture: A Perspective from Patient Life Experience

We hypothesize that optimal management of interstitial cystitis/bladder pain syndrome requires more personalized data than obtained with symptom questionnaires and standard urological assessment. We used a qualitative approach to develop a best evidence series of questions to explore the total clinical picture in the patient with interstitial cystitis/bladder pain syndrome.

The methodology of this project included preliminary focus groups, individual patient interviews, content development and validity analyses to develop a series of questions of value to patients with interstitial cystitis/bladder pain syndrome. A new convenience sample of patients with this syndrome completed the series of questions exploring not only pain and urination symptoms, but also other biopsychosocial parameters noted to be of relevance to these patients.

Content of final series of questions addressed pain, urination symptoms, flares and the 10 most important domains impacted by interstitial cystitis/bladder pain syndrome. Further questions addressed thoughts or feelings, attitudes and suicidal ideation. A series of questions addressed how patients cope with and manage their condition. A total of 32 patients with interstitial cystitis/bladder pain syndrome completed the finalized series of questions. Bladder pain and urination symptoms were primary concerns of patients but other domains related to associated nonurological conditions (poor sleep/persistent fatigue, irritable bowel syndrome-like symptoms, low back and general muscle pain, interference/impact [eg sleep, diet, travel, activities, sexual functioning], positive and negative beliefs/attitudes, and coping mechanisms) make up the total clinical picture for each patient.

The biopsychosocial information provided by our patients will better inform the health care professional on how to develop personalized treatment strategies and also individualized patient directed outcomes independent of bladder pain and urination symptoms.