Pediatric hospitals provide children with chronic urologic malformations with a support network designed to meet their unique needs. As adolescents transition from pediatric to adult care, however, changing patient needs may not be met, risking their health.
Yahir Santiago-Lastra, MD, a board-certified urologist who is also trained in neuro-urology and pelvic reconstruction, explains why offering a transitional urology program, like the one she leads at UC San Diego Health, can increase compliance with disease management and reduce complications.
What are the unique needs of young adults with urologic conditions?
Patients who have congenital urologic conditions, such as those who are born with urogenital or bladder defects or conditions like spina bifida, cerebral palsy, bladder exstrophy and neurogenic bladder or who experience spinal cord injuries, will require specialized care and monitoring for the remainder of their lives. These conditions can have consequences in areas of their health that they would not have experienced or been aware of during childhood, such as fertility and sexual health.
Four decades ago, patients born with these conditions were not expected to survive into adulthood. But as management of these conditions improves, we have done a better job of helping these patients maintain healthy bladders, which is a catalyst for many problems. As kids reach adulthood, we have created a demand for specialized care, but with few people trained to meet the unique combination of needs of these young adults.
Beyond the physical component, adolescents who transition to adulthood and continue to need medical services are not always equipped to navigate a complicated health care system. If they have been receiving care at a pediatric hospital, they likely had all of their appointments and treatments scheduled for them, but when they transfer to adult care facilities they likely will not have the same support system that sets up a continuum of care. These patients are seeing a wide variety of experts — perhaps specialists at different hospitals or clinics — and, without a support system, they may fail to transition into adult care successfully. Aspects of their health may not be addressed and, as a result, additional complications may arise causing them more harm and costing more in health care services.
How does a transitional urology program help?
At UC San Diego Health, our multidisciplinary team includes specialists in voiding dysfunction, sexual medicine, infertility, men's health, urogenital reconstruction, urinary stone disease and general and pediatric urology who together are dedicated to treating and preventing disease, as well as improving quality of life and fostering independence.
We work with our local children’s hospital to identify patients who are ready to transition to adult care. Patients will initially meet with me or
Rachel Shapiro, PA-C, who also specializes in caring for urology patients. Together, she and I develop a transition plan and walk new patients through the new health care process and connect them with their new health care team. At the beginning, we are involved in a lot of coordination of care. We see patients every three to six months, or as needed. But once the transition is complete we will follow up yearly. We collaborate with experts in physical medicine and rehabilitation, neurosurgery, internal medicine, and psychology and social work, to ensure that the transition to adult care is easy and comfortable.
How can physicians who do not have access to a transitional urology program help their patients?
There is data indicating that this already at-risk population is not receiving the urologic surveillance recommended. Refer patients to urology colleagues who specialize in this subset population and can help manage their bladder health. If you have patients who have chronic urologic conditions, focus on four key points that will improve survival and quality of life by replicating what pediatric physicians have done:
- Preserve kidney health
- Manage bladder health
- Preserve continence
- Ensure good quality of life in areas like sexual health, fertility and employment
Remember to track quality of life, complications and use feedback to maximize and improve the delivery of care for these vulnerable patients.
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