Lifetime congenital urologic care: centering patient voices
Abstract
Background: 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.
Main body: 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…
Read the paper
Related studies
- Regulation of nucleolus assembly by non-coding RNA polymerase II transcripts
- For a Healthy Histone Code, a Little SUMO in the Tail Keeps the Acetyl Away
- Discovering a binary CTCF code with a little help from BORIS
- Article Commentary: Stabilizing the Code–-Methods to Preserve RNA Prove Their Worth
- Foreword to the Special Issue for the RINTC (The Implicit Seismic Risk of Code-Conforming Structures) Project
- Commentary: Promoting Health and Well-being in Pediatric Primary Care Settings: Using Health and Behavior Codes at Routine Well-child Visits
Go deeper in Evidence Hub
Evidence Hub adds a study data sheet (design, sample size, evidence level, key numbers), an AI summary and a chat grounded in the paper's text.