Detrusor underactivity (DU) is a potential causal factor in chronic urinary retention, resulting in symptoms of underactive bladder (UAB). Research on UAB has been limited by the absence of a sensitive and reliable measure to capture patient symptoms and experiences. Following federal guidelines for patient reported outcome measures (PROM) development and validation, we implemented a 5-stage study design, including sequential qualitative and quantitative assessments, and in-depth investigation of the subjective experience of patients with urodynamically-confirmed DU. We present here key findings from the concept elicitation.

Interviews followed a semi-structured discussion guide with ample open-ended questions to elicit patient experiences in their own words. Domains included symptoms (e.g., storage, voiding, postvoiding) and impacts (e.g., activities of daily life, burden, quality of life). The guide was constructed with detailed probing to specify individuals’ experience with precise concepts and to allow for the emergence of unanticipated symptoms. Interviews were were audio recorded and transcribed. Data were systematically analyzed using standard methods of qualitative analysis. Data was examined to assess concepts of interest and determine specific language relevant to patients.

Data collection yielded a rich source of firsthand accounts of UAB. Sixty-two participants were included, ranging in age from 46-93 years. Reported symptoms reflected the bladder filling, storage and emptying elements of bladder function. Frequency, hesitancy, nocturia and urgency were the most prevalent symptoms. Storage symptoms were more common among female participants, while males were more likely to describe slow or interrupted stream as well as straining symptoms. More than half of participants reported impacts on physical activity, sleep, social life and/or sex life. All participants reported bother associated with their urinary symptoms ranging from a minor annoyance to a consuming stress. Frequency, hesitancy, and the need for self-catheterization were the most bothersome symptoms. Participants reported that stress and anxiety associated with UAB took a major toll on their well-being. Concern about urgency, incontinence and planning one’s life around toilet visits were cited as bothersome by more than half of participants.

Individuals with underactive bladder report symptoms of impaired storage along with impaired emptying. These symptoms negatively impact emotional well-being, activities of daily living, and quality of life.

Underactive bladder is an under-appreciated urologic disorder with important impact on function and quality of life, which warrants further study. To increase understanding of the patient experience of underactive bladder, a new symptom measure is being developed based on qualitative and quantitative psychometric studies patients with UAB.