Development of a validated quality of life tool specific to children with bladder dysfunction

Aims: To date there have not been any generic or continence-specific measurement tools that allow clinicians to investigate quality of life in children with bladder dysfunction. The aim of this research was to create a cross-cultural tool to assess and measure the wider psychosocial impact of current and new interventions for bladder dysfunction in children. Materials and Methods: The study was conducted in three parts: expert consultation with continence clinicians; design and administration of a child-completed international questionnaire; item analysis, validity and reliability testing, and design of a new tool. Results: The need for a pediatric incontinence QoL measure evaluation was strongly endorsed by clinicians. Data from 156 child-completed questionnaires collected in 10 countries was analyzed for item characteristics and found to be free of item correlation and ceiling and floor effects. Factor analysis revealed 2 factors, which were labeled intrinsic and extrinsic. Rasch analyses showed the internal validity of both subscales was reasonable good. Cronbach's alpha for each factor was 0.91 and 0.72. After analysis, items were selected for the new tool, PinQ and evaluated for ambiguity, clarity, comprehension level required, choice of words and phrases, and age-appropriate concepts. Twenty-one items were finally selected and randomly positioned within the tool. Conclusions: A cross-cultural tool that quantifies the holistic effect of bladder dysfunction in children has been designed and tested for validity.