12/16/2025
Konrad Szymanski, MD, MPH, pediatric urologist at Riley Children’s Health, is developing the first platform specifically for children with spina bifida to address individualized goals of care for continence. Following the successful usability testing of the Set Brave Goals app, the research team at Riley Children’s has made significant strides in advancing its clinical application and expanding its reach.
“As clinicians, we know that goals of care are not the same for everyone,” said Dr. Szymanski. “But we’ve never had a structured platform for documenting the discussions with patients about what’s important to them in terms of their continence. There has been a need for something to track progress so we can help them reach their goals and personalize their care.”
The initial usability study, which included 10 children and 10 parents, revealed high satisfaction with the app’s design and functionality. Both groups rated the app well above the benchmark for excellence on the System Usability Scale, with average scores of 84.5 for children and 89.5 for parents. Participants praised the app’s intuitive interface, engaging visuals, and its ability to support meaningful conversations between families and clinicians about continence management. These findings underscore the app’s potential to enhance shared decision-making and empower young patients in their care journey.
Building on this foundation, the team launched a two-year testing study within the pediatric spina bifida clinic at Riley Hospital for Children, aiming to evaluate the app’s real-world impact on clinical outcomes and patient engagement. This study is scheduled to conclude in February 2026, with results expected to be published shortly thereafter. In parallel, recognizing the need for similar tools tailored to adult populations, the team initiated a new phase of development focused on adapting the app for adults with spina bifida. Through a series of focus groups involving adult patients and urologists, researchers gathered insights into the unique needs and preferences of this demographic. These findings are now informing the design of a prototype adult version of the Set Brave Goals app, which is currently in development. The team anticipates publishing results from this phase in the second half of 2026.
Together, these efforts reflect a broader commitment to creating inclusive, user-centered digital health solutions that support continence care and goal setting across the lifespan. By leveraging technology to facilitate personalized treatment planning and empower individuals with spina bifida, the Set Brave Goals app continues to push the boundaries of innovation in pediatric and adult urology.
For more than a decade, urologists at Riley Children’s have advanced the understanding of spina bifida and its impact on patients. In 2013, Riley Children’s urologists developed QUALAS—a series of internationally validated, spina bifida-specific quality of life questionnaires for adults, teenagers and children—designed to assess the extent to which continence matters to patients with spina bifida. Read more in the annual report.
