Goal achievement provides new insights into interstitial cystitis/painful bladder syndrome symptoms and outcomes.

AIMS: Goal Assessment Scaling (GAS), wherein patients specify goals then evaluate treatments with regard to goal achievement, has proven utility in assessing treatment of complex conditions such as chronic pain, rheumatoid arthritis, and incontinence. We used surveys and focus groups to characterize the goals of patients with interstitial cystitis/painful bladder syndrome (IC/PBS) in order to create a pilot GAS.

METHODS

37 patients with IC/PBS recorded and ranked their treatment goals which were pooled and analyzed for emergent domains and priority rankings. 15 patients participated in 3 separate focus groups. Focus group audiotapes were transcribed and reviewed to identify major themes and goals domains.

RESULTS

140 separate goals were collected. Mean number of goals 4+/-2.73% had pain goals and 56% had frequency and/or nocturia goals. Focus groups revealed that urgency is a separate entity from pain or frequency and any of these may take priority. The groups defined urgency for IC/PBS patient as "the need to urinate due to an unpleasant sensation that prevents attention to any other task." Additional goal domains of control, predictability, and information were explored. Unsatisfactory aspects of common urological surveys were discussed as well as positive and negative aspects of GAS.

CONCLUSIONS

Patients have individualized treatment goals. GAS holds promise for addressing individuality in a standardized format. A new instrument developed from this work is being piloted in a multicenter RCT. We also suggest that questionnaires investigating urgency in IC/PBS clarify the definition in a way more applicable to the specific condition.