Continence goal-setting app enables more personalized treatment approach for spina bifida

The Set Brave Goals app, designed in collaboration with patients and families, allows patients to select goals for continence and track their progress. Information collected through the app, which targets children ages 8 to 17, helps guide clinical decision-making about treatment when meeting with their urologist.

“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.”

Using a qualitative research approach integrated with human design elements, Dr. Szymanski and his team surveyed children and parents and conducted video conference sessions with parents and clinicians to design the app. In addition to goal setting, the app tracks symptoms and progress and allows patients to access in-app personalized strategies and set reminders. Functionality also includes check-ins with clinicians to determine if patients should continue with their clinical plan or make changes. The patient’s data is collected in the app, and a report is generated for the next follow-up visit. Details about the research to develop Set Brave Goals, which is funded by a five-year, $893,000 NIH grant, were published in the Journal of Pediatric Urology in March and April 2023.

“The app’s reports serve as springboards for clinical discussions about how to meet patient’s personal continence goals, which change as they get older,” Dr. Szymanski explained. “We’re finding that the app not only frames clinical discussions but also fosters collaboration and shared decision-making between the patient, the family and the clinician. This helps ensure everyone is on the same page related to the goals of care.”

Leader in quality of life research

Studying the impact of spina bifida on patients’ quality of life is not new for urologists at Riley Children’s. Beginning in 2013, Riley urologists developed QUALAS, a series of internationally validated, spina bifida-specific quality of life questionnaires for adults, teenagers and children. QUALAS is designed to assess the extent to which continence matters to patients with spina bifida. Riley Children’s hosts the world’s largest database of children and adults with spina bifida and has the largest adult transitional clinic in the world for spina bifida patients.

“The app is another step in exploring how this lifelong disease and its treatments impact quality of life,” Dr. Szymanski said. “It’s about continuing to push the envelope to make sure we take care of patients and parents in the best way possible.”

Beta testing for Set Brave Goals began in 2023 with 92 patients. Once the app is tested and fully developed, the goal is to make it freely available to patients and clinicians via app stores. Dr. Szymanski said there also will be opportunities for patient users to self-enroll in studies about how they use the app, which will help enhance user experience.

“Our hope is that the app will give us a much-needed platform for meaningful conversations about how we as clinicians can best collaborate with our patients to help them meet their goals,” he said. “With the app, we can track them in a robust, scientific way to deliver personalized care over the long term.”

Dr. Szymanski was recently awarded a two-year, $118,000 grant from the NIH to adapt the Set Brave Goals app for adult users.