The UPMC Adult Spina Bifida Clinic: A Multidisciplinary, Longitudinal Model for Optimal Patient Care, Support, and Advocacy
December 16, 2025
About This Article Series on the UPMC Adult Spina Bifida Clinic
This article is the first in series detailing the work, goals, and accomplishments of the UPMC Adult Spina Bifida Clinic through the perspectives of the team who have built it and continue to grow its reach and impact on adults living with spina bifida.
Other articles in this series include:
Access to comprehensive adult care for individuals living with spina bifida remains a significant gap in the United States. Approximately 166,000 people nationwide are living with the condition, and the majority are adults. While multidisciplinary pediatric programs are well established, comparable adult-focused models remain limited across the country.
The origins of the UPMC Adult Spina Bifida Clinic can be traced to the longstanding regional infrastructure for spina bifida care that began in Pittsburgh in the 1970s. The Spina Bifida Association of Western Pennsylvania (SBAWP) was founded in 1969 by a group of parents seeking better care coordination for their children. Through their advocacy and the leadership of pediatric neurosurgeon Donald Reigel, MD, the first multidisciplinary spina bifida clinic in Pennsylvania was established at UPMC Children’s Hospital of Pittsburgh in 1974. Over the following decades, as these patients reached adulthood, the absence of an equivalent adult care model became increasingly apparent.
By the early 2000s, the Department of Physical Medicine and Rehabilitation at the University of Pittsburgh School of Medicine recognized this growing need and successfully obtained funding from the Pennsylvania Department of Health’s Specialty Care Program to develop a dedicated adult clinic. The UPMC Adult Spina Bifida Clinic was formally established in 2003 with comprehensive services designed to address preventive care, aging, mobility, and functional independence in adults with spina bifida.
Brad Dicianno, MD, professor of physical medicine and rehabilitation and assistant dean for medical student research at the University of Pittsburgh School of Medicine, became director of the clinic in 2005. Since then, the clinic has grown into one of the largest adult-focused spina bifida programs in the country. In addition to directing the clinic, Dr. Dicianno also serves as medical director of the UPMC Center for AssistiveTechnology and as medical director and chief operating officer of the Human Engineering Research Laboratories, a joint venture of the University of Pittsburgh and the U.S. Department of Veterans Affairs. His clinical and research work centers on long-term wellness, assistive technology, and system-level innovation for individuals with complex disabilities.
“The programs and models of care for children with spina bifida that exist at many children’s hospitals across the country are just not that common for adults,” Dr. Dicianno says. “Unfortunately, that means many adults living with spina bifida lack access to specialized care that can improve their health and quality of life as they age.”
What makes the UPMC Adult Spina Bifida Clinic special is its comprehensive, interdisciplinary model of care housed within the realm of physical medicine and rehabilitation, and the people who have helped to create it and keep it running. Currently, four members of the program’s clinical team live with spina bifida, lending firsthand perspectives to how patient care is planned, designed, delivered, and monitored.
Those individuals include Monica Albert Still, BSN, RN, the clinic’s nurse coordinator; Sara E. Izzo, BA, research coordinator for the program’s National Spina Bifida Patient Registry work and coordinator of the Peer Navigation Program; Cheyenne Hennen, BA, research coordinator and peer mentor; and Dan McCoy, MS, ACE-CPT, a certified personal trainer, adaptive fitness trainer, and Paralympic gold medalist. Along with the rest of the program’s clinical and support staff, they help ensure the program is medically comprehensive and experientially grounded in the care and services it offers adults living with spina bifida.
Redefining Expertise Through Lived Experience as Clinical Infrastructure
The decision to embed individuals with lived experience into core roles within the program was deliberate and transformative. For Still, who has worked as a nurse for more than two decades, it allows her to relate to patients not just clinically but personally.
“There’s an understanding that goes both ways,” Still says. “Patients do not have to explain what it’s like to live with spina bifida. They know I get it. That kind of trust makes a difference, especially when talking about sensitive or complicated medical issues.”
Izzo, who holds dual roles as research coordinator and peer navigator, describes her position as a bridge. She often supports patients preparing for visits, helping them understand their rights, anticipate questions, and articulate concerns to the care team.
“We work on building confidence and communication,” Izzo says. “A lot of patients never had a provider ask them directly what they want. That shift can be uncomfortable at first, but over time, they begin to take ownership of their care in a new way.”
McCoy brings his experience as a Paralympic athlete with spina bifida to his role as a certified personal trainer. He meets with patients one-on-one to build accessible, goal-oriented fitness programs, and he works to dispel misconceptions about what is physically possible for someone living with spina bifida.
“When people see me, they understand this is not theoretical,” McCoy says. “I’m showing them what’s possible and helping them push through limits they didn’t know they could overcome.”
Hennen, the most recent addition to the team, supports research and peer mentoring efforts in the clinic. She helps patients navigate care systems, shares her own experiences, and reinforces that support is available from people who understand.
“I first connected with the program as a patient through the Peer Navigation Program,” Hennen says. “Having a mentor introduced me to resources I did not know about before, and that experience eventually led me to my current role as a research coordinator and peer mentor.”
A Multidisciplinary Program Grounded in Physical Medicine and Rehabilitation
The UPMC Adult Spina Bifida Clinic is anchored in the principles of physical medicine and rehabilitation. The core clinic team includes a physiatrist, physician assistant, nurse coordinator, neuropsychologist, dietitian, social worker, personal trainer, and two peer counselors. Additional collaboration occurs across specialties, including urology, neurosurgery, wound care, orthopaedics, pulmonology, and gynecology.
This structure allows for longitudinal, holistic care that evolves with patients over time. Many individuals enter the program in early adulthood during the transition from pediatric care, while others arrive later after years of fragmented or limited services.
“Physical medicine and rehabilitation provide a natural home for this kind of care because of the way we are trained to think,” Dr. Dicianno says. “We manage medical complexity while also focusing on function, independence, and quality of life.”
Having a consistent care team that understands spina bifida rather than re-explaining the condition to every new provider is vital to continuity and trust.
“Finding a provider who understands their condition is the number one concern of adults with spina bifida and of parents of adults with spina bifida,” Dr. Dicianno says.
The Priority of Proactive Care
Preventive care is a cornerstone of the clinic. Adults with spina bifida are at elevated risk for complications such as urinary tract infections, pressure injuries, respiratory infections, and sepsis — many of which are preventable with proper surveillance and education.
“If you look nationally at why patients with spina bifida end up in the emergency department or hospitalized, they are largely preventable events,” Dr. Dicianno says. “By focusing on early intervention, we can reduce the need for hospitalization and preserve function.”
Still’s role includes developing detailed, portable care plans that follow patients throughout the health system.
“These care plans explain what’s typical for the patient and what isn’t,” Still says. “That way, if someone ends up at the hospital for an emergency or sees a specialist unfamiliar with spina bifida, they have a roadmap.”
Beyond the Medical Model: Considering Fitness, Nutrition, and Access
Through longstanding grant support from the Pennsylvania Department of Health, the clinic offers services often not covered by a patient’s insurance. These include adaptive personal training, nutrition counseling, case management, and access to a Client Assistance Fund (CAF) that offsets some costs for copays, transportation, and supplies.
McCoy’s training sessions are tailored and pragmatic. “I meet people where they are —literally and physically,” he says. “Some are just trying to get stronger at transfers. Others want to be more independent at home. Some want to train competitively. We find a way to get there.”
Nutrition services, coordinated by an in-clinic dietitian, support patients with metabolic concerns, weight management, and gastrointestinal issues, all of which may be complicated by mobility limitations or bowel and bladder regimens.
The CAF is one of the most important tools the clinic uses to help patients follow through with recommended care.
“For some people, a $20 copay means missing the appointment,” Still says. “This fund helps ensure that those barriers do not prevent care.”
A National Referral Destination and Evolving Model of Care
The clinic follows roughly 250 active patients annually and has served more than 700 since its founding. Referrals come from throughout Pennsylvania and surrounding states, and in some cases, from across the country.
“There simply are not many places equipped to provide comprehensive adult care for spina bifida,” Dr. Dicianno says. “We regularly see patients who have traveled long distances because this care is not available where they live.”
Further Reading and Resources
Visit the UPMC Adult Spina Bifida Clinic website for more information and patient referrals.
