Identification of adolescent and adult patients receiving pediatric urologic care and establishment of a dedicated transition clinic

Abstract

Introduction: Pediatric patients with chronic urologic conditions frequently require lifelong evaluation and treatment. Transition to adult urologic care is critically important as these patients mature and the goals of care shift to include sexual function, fertility, and reconstruction.

Objective: Our objectives are to (1) quantify and describe the population of young adult patients with congenital or childhood-acquired urologic problems who continue to be followed in pediatric urology clinic, to (2) discuss the numerous obstacles to successful care transition, and to (3) outline the design features of the dedicated transition clinic we established in response to the identification of a sizeable population in need.

Study design: We (1) performed a retrospective review of our electronic health record to identify young adult patients 19-35 years of age seen in pediatric urology clinic over a five year period. Patients without a chronic urologic diagnosis were excluded. We identified each patient's primary diagnosis and status with respect to transition of care. We then (2) established a dedicated transition clinic to facilitate progression to adult care services at our institution.

Results: Among 480 young adult patients seen in the pediatric clinic during the five-year period, 99 patients with an average age of 22.4 years were identified as having a chronic congenital or childhood-acquired diagnoses requiring urologic care. At the end of the five-year period, 40 of 99 patients (40.4%) had successfully transitioned to adult care while 59 patients (59.6%) continued care with pediatric urology. Among patients yet to transition, spinal dysraphism (30%) was the most common primary diagnosis. In this same group, discussion regarding transfer to adult care was documented during at least one visit in only 8 of the 59 patients (13.6%). All patients in this cohort had healthcare needs that included sexual function, fertility, or reconstruction.

Discussion: The present data confirm the presence of sizeable population of young adult patients with chronic urologic problems and maturing care needs who 1) continue to receive exclusively pediatric care, and 2) are rarely engaged in preparatory discussions regarding care transition. Obstacles to successful transition of care are numerous and include limited staff training, lack of identified staff member responsible for transition, financial and psychosocial barriers, and discomfort on the part of physicians, patients and families. We describe the additional challenges that are unique to transition of care in urology. We share a blueprint of our recently-established transition with the hope of prompting additional discussion and facilitating transitional urologic care elsewhere.

Conclusion: Many young adult patients with chronic urologic conditions continue to receive care from pediatric urologists well into adulthood. We hope that our clinic might serve as a model for augmentation of urologic transition services at other institutions. We anticipate a future report evaluating our clinic's impact on long-term follow up, clinical outcomes, and patient satisfaction.

Keywords: Chronic urologic problems; Myelomeningocele; Spina bifida; Transition clinic; Transition of care; Transition to adult care.