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growth of the Children's National Spina Bifida Program

A look at the Children’s National Spina Bifida Program

The Spina Bifida Program at Children’s National Hospital, led by co-directors, Christina Ho, M.D., and Briony Varda, M.D., has seen impressive growth and there are plans to continue expanding the program. Drs. Ho and Varda share insights on the multidisciplinary care being provided, along with their plans for the future of the program.

Q: How would you describe the growth of the program?

A: The growth of the Spina Bifida Program has been remarkable! The graph below really shows it all (more than a 25% increase in patient visits in the past year). We currently hold multidisciplinary programs including providers from neurosurgery (Robert Keating, M.D.), orthopaedic surgery (Matthew Oetgen, M.D.), physical medicine and rehabilitation (Mi Ran Shin, M.D.), urology (Briony Varda, M.D. and Christina Ho, M.D.), and expanded to include bowel management (Celicia Little, N.P.), gynecology (Allison Mayhew, M.D.) for our adolescent patients, as well as a dedicated nurse, Nicole Allentuck, R.N., and program associate, Christine Scott.

We are extremely proud of how the program has grown, particularly through the past two years, with the advent of our adolescent clinic and having a dedicated supportive team that ensures we have significant re-engagement of patients who had previously been lost to care. We are also working with the Prenatal Pediatrics Institute at Children’s National to enhance our prenatal care for patients diagnosed with spina bifida.

growth of the Children's National Spina Bifida Program

Q: What advancements is the spina bifida program making that benefit patients?

A: We have developed a transition clinic for our adolescent spina bifida patients to help address goals of care, independence with care and readiness for transition to adult providers. Our program coordinator, Celicia Little, N.P., also oversees our bowel management program to provide specialized bowel management care for our patients. We have been working on educational information specific to different areas within spina bifida, including how to catheterize, common medications, bowel management and anticipatory guidance. This helps to provide longevity for our patients as well.  We are evaluating ways to decrease visits to the emergency department and ensure appropriate antibiotic usage with proper diagnoses of urinary infections in patients who perform CIC.  To further our goal of providing longitudinal care within our program, we have engaged gynecology colleagues to see patients within our adolescent clinic and begin promoting independence through perpetuated discussions (e.g., are they able to schedule their own physician appointments or grocery shop for themselves?) in preparation for adult transitional care. Additionally, we readily offer telehealth visits for convenience and in hopes of easing access to care.

Q: Looking ahead, what’s next for the Spina Bifida Program? How will we continue to measure success?

A: We are excited to continue expanding our Spina Bifida Program. We currently care for more than 500 patients within the Washington, D.C., Maryland and Virginia areas. We want to continue to include patient narratives through our research initiatives to inform quality of care, including decreasing E.D. utilization and needless antibiotic use. We also want to expand our adolescent program to include sexual healthcare as they transition to adult care with our adult collaborators within MedStar and GWU. We would like to provide more comprehensive care, improve access to care, and ensure patients and families have utilization of the armamentaria of medical resources available at Children’s National.

Briony Varda

Q&A with urologist Briony Varda

Briony Varda

Briony Varda, M.D., M.P.H., is fellowship trained in pediatric genitourinary reconstructive surgery and her subspecialty interests include the care of patients with spina bifida and the neurogenic bladder, cloacal anomalies, hydronephrosis, vesicoureteral reflux and posterior urethral valves, among others.

Children’s National Hospital recognizes many urologic disorders and illnesses that are unique to children. As such, we pride ourselves in working with top urology experts, including Briony Varda, M.D., M.P.H., pediatric urologist, who recently joined the Urology Division at Children’s National.

Dr. Varda is fellowship trained in pediatric genitourinary reconstructive surgery and her subspecialty interests include the care of patients with spina bifida and the neurogenic bladder, cloacal anomalies, hydronephrosis, vesicoureteral reflux and posterior urethral valves, among others.

Here, Dr. Varda tells us more about her work and what it means for the future of pediatric urology patients at Children’s National.

Q: Why did you decide to work in this field?

I have always thoroughly enjoyed working with children. They keep you on your toes, tell it straight, make you laugh and demonstrate unique resilience. At the same time, surgery allows me to work with my hands, while being creative and helping others. Finally, I had great mentors within pediatric urology who strongly influenced me in a positive way.

In sum, the kids, the surgery and the people led me here.

Q: What is the importance of urology care?

We have three goals in pediatric urology: protect the kidneys and bladder, prevent infection and help our patients stay dry.

Although it’s usually clear when kids have urinary tract infections or trouble with urinary accidents, it’s not always visible when there is a problem with the kidney or bladder. Urologic care is therefore important because it prevents long-term damage that might otherwise go unnoticed until it is too late. This is particularly true for patients with abnormal functioning of the bladder related to a neurologic cause, such as spina bifida or a tethered spinal cord.

Q: How has the program expanded and what are some of the most valuable changes you hope to see in the next couple of years?

Our Spina Bifida Program currently includes physicians from physical medicine and rehabilitation (PMNR), orthopedics, neurosurgery and urology. Our newest additions include a full-time nurse practitioner who facilitates care coordination and has a clinical expertise in bowel management, two new urologists (myself and Christina Ho, M.D.), and Mi Ran Shin, M.D., who is our new PMNR physician.

We are also collaborating closely with the new Pediatric Colorectal & Pelvic Reconstruction Division for patients who need advanced bowel management. These additions will go a long way to helping improve the day-to-day living of our patients and help improve their long-term medical outcomes.

In the coming year, we are anticipating welcoming another full-time nurse to our program, offering more patient-facing resources including a webpage focused on urodynamics and an array of new patient education materials. We are also hoping to establish a regional transitional care network for our adolescent and young-adult patients.

Q: The Colorectal Program at Children’s National includes three urologists. How does this collaboration allow for the care of more complex cases at this hospital?

We are fortunate to be part of the Colorectal Program here at Children’s National Hospital. We provide subspecialty expertise for patients born with anorectal malformations, including cloacal anomalies and cloacal exstrophy. Although historically considered a general surgery problem, patients with anorectal malformations have a high rate of concomitant conditions affecting their genitourinary anatomy and function. By coordinating clinical care and surgery within a multidisciplinary team, we provide comprehensive care for even the most complex patients – nothing goes unnoticed and each subspecialist provides a unique perspective on management as it relates to their field.  Along with ourselves and the colorectal surgeons, we regularly collaborate with gynecology, gastroenterology, interventional radiology and anesthesia.

Q:  What is some of the research you’re working on now that you’re looking forward to the most?

We are currently designing a set of research projects aimed at investigating low-value healthcare utilization (for example, emergency room use and inappropriate testing) among patients with spina bifida. I plan to investigate institutional patterns and then expand out to the Washington, D.C., Maryland, Virginia area and the national setting. By identifying patterns in low-value healthcare utilization and their associated factors, we can ideally improve care delivery for this special healthcare needs population.

We are also working on institutional protocols to enact recently published guidelines by the Spina Bifida Association and the CDC so that we can eventually contribute our own data to national registries. This will pave the way for increasingly rigorous spina bifida research in the future.