Helping Spina Bifida Patients Navigate the Important and Complex Transition Process to Adult Care

This article is part of a larger series of articles on the UPMC Adult Spina Bifida Clinic. Visit the series main article for links to other article in the series.”

For adolescents and young adults with spina bifida, the transition from pediatric to adult health care presents a unique and complex set of challenges. The shift involves not only changes in medical providers and care environments, but also the assumption of greater responsibility for managing a lifelong condition largely on one’s own. For many patients, this period coincides with important life changes and milestones in education, employment, independent living, and social development. Without structured education and ongoing support during this time, gaps in care can occur and lead to preventable downstream issues with a person’s overall health and well-being.

At the same time, cognitive profiles associated with spina bifida, including difficulties in executive function, can complicate the development of self-management skills. Tasks like scheduling appointments, refilling medications, and coordinating care across providers may require significant support and planning. As a result, adolescents often need guided preparation that begins well before the age of transfer.

Recognizing this, the UPMC Adult Spina Bifida Clinic has developed a structured, longitudinal approach to transition. The program integrates early exposure to adult providers, progressive development of self-advocacy skills, and targeted interventions to address cognitive and psychosocial readiness. The goal is not merely to transfer care at a designated age but to prepare patients for sustained health and independence in adulthood.

“We begin talking about transition the day a baby is born,” says Darcie Petrillo, MPAS, PA-C, an advanced practice provider in the UPMC Department of Physical Medicine and Rehabilitation and UPMC Rehabilitation Institute who specializes in neurorehabilitation and helping patients and families transition from pediatric to adult care.

Building a Longitudinal Transition Framework

While transition education begins early in pediatric care, Petrillo and colleagues begin actively seeing patients for transition planning around ages 15 to 16. In the pediatric clinic at UPMC Children’s Hospital of Pittsburgh, Petrillo builds connections and coaches adolescents to participate more actively in their care. These visits provide opportunities to assess readiness and lay the foundation for future skills.

In addition to her visits in the pediatric clinic, Petrillo leads a dedicated transition clinic for patients who are nearing transfer to adult care, typically around age 21. This clinic is costaffed by Monica Albert Still, BSN, RN, and Personal Trainer Dan McCoy, MS, ACE-CPT, both of whom also work in the adult clinic. This continuity allows patients to begin forming relationships with members of the adult team before their first official visit.

“The goal is to make sure there are no surprises,” Petrillo says. “They’ve seen us before, they’ve heard how things work in the adult clinic, and they know who to call if they have questions or are experiencing a problem with their health.”

Fostering Self-Advocacy and Health System Literacy

Teaching adolescents how to navigate the health care system is a foundational component of the transition program. Petrillo and her colleagues work with families to progressively shift responsibility to the patient, encouraging teens to ask questions, understand their diagnoses, and engage in decision-making.

“We try to prompt the patient to speak first whenever possible,” Petrillo says. “Sometimes it’s as simple as asking, ‘Do you know what medications you’re on?’ The answer might be no, but that opens the door to learning.”

Petrillo also introduces conversations about Medicaid, waivers, insurance logistics, and transportation planning. These practical topics are often unfamiliar to both patients and caregivers, and the team provides repeated, stepwise guidance.

“We talk about how to refill medications, how to schedule appointments, and how to understand letters from insurance companies,” Petrillo says. “Some of these skills are easier to learn if you start early.”

Still, who has worked in the transition program since its inception, sees transition education as a way to prepare families not just for medical changes but for broader shifts in lifestyle expectations.

“Families have spent years in a pediatric system where care is highly coordinated for them,” Still says. “In the adult world, that’s not always the case. They need to know how to advocate and coordinate care for themselves.”

To reinforce skill building, the team is working to implement structured assessments and checklists that track self-management milestones. These tools allow providers to identify gaps early and address them systematically.

Addressing Executive Function and Cognitive Burden

Cognitive challenges, particularly executive dysfunction, are a concern for many individuals with spina bifida. The team uses direct assessment and observation during clinic visits to evaluate each patient’s capacity for independent management. Where difficulties arise, targeted strategies are introduced.

“I’ll recommend apps, visual planners, or even just setting a recurring alarm for medications,” Petrillo says. “We try to match tools that fit the individual’s routine.”

Patients with more significant cognitive impairments may require long-term caregiver support. In these cases, the team works closely with families to define realistic expectations and ensure safety while promoting autonomy when possible.

“Some young adults can manage everything themselves. Others will always need help with organization or decision-making. We tailor the approach accordingly,” Petrillo says.

The clinic’s neuropsychologist, Ted Allaire Barrios, PhD, becomes involved when there are concerns about decisional capacity, functional skills, or the need for guardianship planning. These assessments guide families in legal and practical preparations for adulthood.

“We’re not just looking at whether they know their medications,” Petrillo says. “We’re also looking at how they make choices, what kind of support they need, and how to scaffold independence as much as possible.”

Continuity and Team-Based Support

The structure of the transition clinic is designed to mirror the adult clinic, providing a sense of familiarity and continuity. Still and McCoy participate not only to introduce patients to their future providers but also to answer logistical questions and share practical advice.

“I think it’s comforting for families to see that the adult clinic is staffed by people who understand spina bifida deeply,” Petrillo says. “We’re not throwing them into the deep end of the pool without support, understanding, and compassion.”

Still emphasizes the importance of early discussions about adult care systems, which can be dramatically different from the pediatric model.

“A lot of families are surprised by how much more independent they’re expected to be when entering adult care,” Still says. “We try to prepare them for what that shift looks like, so they are not caught off guard.”

McCoy, who brings lived experience to his role, provides a relatable presence for adolescents who may be anxious about the transition.

“Having someone who has gone through it helps normalize the process,” McCoy says.

In both clinics, McCoy promotes wellness and self-confidence through adaptive fitness training, helping to redefine independence beyond clinical benchmarks.

“Physical health and confidence are closely linked,” Petrillo says. “Dan shows patients what’s possible and helps them take ownership of their bodies.”

Future Plans for the Transition Clinic

The UPMC Adult Spina Bifida Clinic’s transition model continues to evolve. Petrillo and her colleagues are exploring ways to build more structured transition curricula, including modules on health literacy, employment, transportation, and adult living skills. Starting these conversations earlier in childhood is a priority.

“There’s only so much you can do in a few visits,” Petrillo says. “If we had a longitudinal education program that started at age 10, I think we’d see even better outcomes.”

Future initiatives include expanding the transition team, integrating digital learning tools, and formalizing metrics to track patient readiness and engagement post-transition. The team also is exploring partnerships with schools and community organizations to support broader life skills education.

“Our goal is to help these young adults lead fulfilling lives, not just medically stable ones,” Petrillo says. “That takes thoughtful, individualized preparation.”