Lifetime congenital urologic care: centering patient voices

Adults with congenital urologic conditions, such as bladder exstrophy and vesicoureteral reflux, often require lifelong care that begins with childhood surgical reconstructions and extends through adolescence and adulthood with ongoing surveillance, follow-up care, and revision procedures when needed. Measurement of "success" can be difficult to quantify, as the definition of success may differ between parents and patients later in adulthood, and the definition of success should extend beyond f technical success to the broader care interventions and long-term outcomes, which often requires decades of follow-up time. The traditional clinician-defined endpoints may not capture what patients consider as "success" in the context of the adult patients' evolving goals for urinary function, sexual health, fertility, body image, and mental health across the lifetime. Patient-centered outcomes research offers a framework for centering patient voices, yet this has rarely been applied in adult congenital urology.

Guided by the Patient-Centered Outcomes Research Institute (PCORI) foundational expectations in patient engagement, we developed a structured community-partnership methodology for the patient-centered research process in lifetime congenital urologic care. The framework includes six steps: (1) partnership formation; (2) inclusive recruitment and relationship building; (3) co-defining research questions; (4) collaborative data generation and interpretation; (5) dissemination and knowledge return; and (6) iterative reflection and process evaluation. We illustrate its application through two collaborations. First, with the Unsilenced Movement (UM), a patient advocacy group addressing medical trauma related to childhood voiding cystourethrogram testing, to qualitatively analyze patient narratives and co-interpret themes related to post-traumatic stress and healthcare avoidance; second, with the Association for the Bladder Exstrophy Community (ABEC) to co-design a patient-driven survey to assess goals, needs, and barriers across the lifespan for those living with bladder exstrophy. In both partnerships, patient representatives served as core research team members, co-authors, and co-presenters of findings, and ensured that patients' lived experiences were translated accurately in a rigorous methodology.

This framework shows how early and sustained collaboration with patient advocacy communities can reshape research prioritization, outcome selection, and interpretation of data in lifetime congenital urologic care. By centering patients' lived experiences and defining success together, researchers can move beyond clinician-defined metrics towards outcomes that better reflect patient priorities. This methodology is adaptable to other congenital and chronic conditions requiring complex medical and urological care.