Growing Up With Neurogenic Bladder: Navigating the Challenges and Controversies in Pediatric to Adult Transition and Lifelong Care: A Report From the Neurogenic Bladder Research Group (NBRG)

Objective: Young adults with spina bifida (and other congenital neurologic diseases) have their own aspirations that may include education, employment, relationships and having children. As they move from pediatric to adult care, they must eventually transition to an adult healthcare team. The objective of this paper is to review the challenges and controversies in the transitional and adult care of people with congenital neurourological diseases. Methods: The Research Group convened a meeting of its members and invited guests to better understand the healthcare challenges faced by these patients as they become adults. The group examined potential research opportunities focused on people with these diagnoses and themes related to their healthcare. Results: Trust and clear communication are essential for effective patient transition. Ideally parents are involved in the transition to help reinforce independent self-care and responsibility. Adolescents require education about sexual health and independence, which may not be part of the core skillset of a urologist. The healthcare team must promote self-management and autonomy as early as practical. One of the major limitations is that adult care lacks the coordination of pediatric care, and patients may not have a “medical home.” Multidisciplinary clinics are ideal but face logistical barriers in adult medicine. Additional barriers include limited physicians with the required specialized training. In the adult system, financial constraints are a key challenge for patients and providers. Conclusion: Collaboration, supported by institutions and new research, is vital for improving the neurourological care of young adults with complex diseases. Trial Registration: This study reports on the proceedings of a meeting, and therefore clinical trial registration was not necessary.