Spina Bifida: Bridging the Gap Between Pediatric and Adult Care

Earlier this year, the Spina Bifida Association of Central Florida (SBACFL) made a $20,000 gift to the Spina Bifida Clinic at Arnold Palmer Hospital for Children and Orlando Health.

Earlier this year, the Spina Bifida Association of Central Florida (SBACFL) made a $20,000 gift to the Spina Bifida Clinic at Arnold Palmer Hospital for Children and Orlando Health. The gift provides critical funding to a transitional care program, providing vital services that bridge the gap between pediatric and adult care for Spina Bifida patients.

Orlando Health has been providing care to pediatric Spina Bifida patients for over 35 years, treating patients up to age 21. The program is one of the largest and busiest spina bifida programs in the region with hundreds of children with Spina Bifida coming from all over Florida to receive optimal, multidisciplinary care.

The keys to success for this the pediatric program are two unique features. First is that children are scheduled for comprehensive visits on a regular basis so they are seen by all necessary providers on a single day. This includes coordinating a range of providers such as medical specialists, care givers and brace and wheelchair specialists. The single-day clinic concept ensures an individualized, one-stop shop of comprehensive care for patients while simultaneously reducing stress for patients and family members.

The second major concept is that a team conference is held after clinic to discuss each patient individually and to set goals for the next 6-12 months. This sets Orlando Health’s program apart from almost all other programs. There are other Spina Bifida programs where patients are seen by many specialists on the same day, but very few hold a conference after each clinic. These unique program features – in combination with the dedicated nurse coordinators who stay in touch with patients and their families to guide patients’ plans – make the care received in the clinic some of the best and most personal care available for patients with this complex condition.

The physicians and professionals involved in the pediatric program have seen it grow over several decades and have been able to witness the tremendous impact it has had on patients and caregivers. The program has not only been successful in in providing preventative care and reducing unnecessary emergency visits, but it has also made available well-rounded, holistic care to patients. Recently, providers alongside community partners have decided to expand the program for patients who have “graduated” from the pediatric clinic, as they began recognizing that these patients face additional and unique needs as adults.

Once out of the pediatric clinic’s care, patients had to seek out and find several specialists to take care of them. Adult patients’ problems fell through the cracks, often resulting in them returning to the hospital with preventable conditions. Parents and caregivers would spend many hours trying to figure out which doctor to see when health problems arose and needs such as getting braces and wheelchairs were difficult and confusing when compounded with the need to seek out medical care. Because of these issues, Orlando Health and SBACFL came together to pioneer a new initiative that would establish a comprehensive network of care for adult Spina Bifida patients.

In this new model there will be a multidisciplinary network of physicians, therapists and social workers to assist adult Spina Bifida patients with their needs. In addition to establishing a new network of care, this program will also teach life skills to adult patients that help them become independent. Because of this joint effort between SBACFL and Orlando Health, Florida will be one of the few states in the country that can provide coordinated and comprehensive adult care for Spina Bifida patients.

A program like Orlando Health’s Spina Bifida Program is seldom found due to the large amount of time, funding and commitment of professionals needed to support a truly comprehensive clinic, especially one with a multidisciplinary conference component. Having this impactful program available in our community is a testament to all of the passionate individuals who support this effort including physicians, staff, care coordinators, and the Spina Bifida Association of Central Florida. Because of their dedication, Arnold Palmer Hospital continues to be an inspiring example as it becomes a true leader in care for children and adults with Spina Bifida.