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transition care

Transition care for endocrinology patients

In the UAB STEP Clinic, Sajal Patel, M.D., helps patients with the move from pediatric to adult care.

The transition from pediatric to adult health care can be daunting, especially for people with chronic conditions requiring long-term management. Sajal Patel, M.D., an endocrinologist at Children’s of Alabama and the University of Alabama at Birmingham (UAB), understands this challenge. With her training in both pediatric and adult endocrinology, Patel is uniquely equipped to guide patients through this transition. Central to her work is the UAB Staging Transition for Every Patient (STEP) program, which is designed to ensure continuity of care for children as they move from pediatric to adult health care.

The dual role of Med-Peds specialists

Patel’s career path as a Med-Peds specialist combines training in internal medicine and pediatrics, allowing her to care for patients across the age spectrum. Her expertise is especially valuable in endocrinology. Thanks to modern medicine, many with pediatric endocrinopathies now survive into adulthood. For these individuals, Patel plays a key role in managing their ongoing care and preparing them to enter the adult healthcare system.

“Endocrinology is critical for Med-Peds because many pediatric patients are growing up with conditions we used to think of as life-limiting,” Patel explained. Her dual training enables her to address the unique problems of both pediatric and adult care, providing a seamless bridge for her patients.

A lifeline for transition

The STEP Clinic is a transitional program for patients with complex medical needs. These individuals often require care from multiple specialists or rely on complicated medical devices, like insulin pumps or ventilators. For Patel, the clinic is a vital resource for ensuring these patients do not fall through the cracks during the transition to adult care.

Beyond medical specialties like endocrinology, the STEP Clinic also addresses broader challenges such as legal guardianship, wheelchair accessibility, and long-term care placement. Patel collaborates with primary care providers and specialists to ensure every patient’s needs are met. She describes the clinic as a bridge, usually involving three to six visits to help patients transition to appropriate adult care providers.

Challenges in transitioning care

There are significant differences between the pediatric and adult healthcare system. Pediatric care often involves more hands-on support and frequent check-ins; adult care typically places greater responsibility on the patient. This shift can be overwhelming, particularly for people living with chronic conditions.

Insurance changes also pose a major hurdle, especially for people managing diabetes. “A lot of the medications and technologies covered by pediatric insurance are not automatically covered in adult plans,” Patel said. Her role includes helping patients overcome these complexities to maintain effective treatment.

A model for continuity

While the STEP Clinic is relatively new, it’s already making an impact. “It feels like a night-and-day difference,” Patel said. Both providers and families benefit from the program’s structured approach to the transition. Families gain peace of mind knowing their loved ones will receive consistent care, while providers feel confident that patients are not being lost in the system.

As healthcare continues to evolve, programs like the STEP Clinic offer a promising model for ensuring continuity of care. For Patel, the ultimate goal is to provide patients with the support they need to thrive as they transition into adulthood.

January 8, 2025 by childrensal

At Children’s of Alabama, Transitioning Spina Bifida Patients to Adult Care Begins at Age 13

Professional heavyweight boxer Deontay Wilder greets a patient while touring Children’s of Alabama’s Comprehensive Spina Bifida Program space in this 2015 photo. The multidisciplinary program treats about 500 patients a year.

Before the 1970s, about one in four infants born with spina bifida died. Today, thanks to advances in neurosurgery, genitourinary surgery, gastroenterology and physical medicine and rehabilitation, between 75 and 80 percent now survive into adulthood.[1]

But surviving doesn’t mean thriving. That’s what clinicians from Children’s of Alabama’s multidisciplinary Comprehensive Spina Bifida Program, which treats about 500 patients a year, learned when they joined specialists at the University of Alabama at Birmingham (UAB) to develop an adult spina bifida clinic. While there is a greater awareness in the pediatric community about the overall need for transitional programs, said Jeffrey P. Blount, M.D., FAANS, chief of pediatric neurosurgery at Children’s of Alabama, more is needed than simply transferring a patient’s medical records.

“Our patients were arriving unprepared not just for adult health care, but for adult life in general,” said Spina Bifida Program Coordinator Betsy Hopson, MSHA, who assists patients in the transition from pediatric to adult care. “We’d watch them grow up and hear about their dreams but every year it seemed like the light inside them was becoming dimmer and their opportunities fading away.” By the time they arrived at the adult clinic, she said, many patients were depressed and their childhood dreams seemed to have disappeared.

“We thought, ‘We’ve got to do better with this next generation,’” Hopson said.

They, along with Children’s of Alabama neurosurgeon Brandon Rocque M.D., MS, FAANS, started with data, surveying 188 patients in the adult clinic about their perceptions of their own disability. More than half (56.4 percent) identified as permanently disabled, with the most important predictors of disability being poor bowel continence and low education.[2]

They also found that 70 percent of those surveyed were not working and, again, poor bowel continence and low education were determining factors, as well as diagnosis (open versus closed spinal dysraphism). Rocque emphasized that patients with daily bowel accidents were six times more likely to be unemployed, while those with weekly accidents were three times more likely to be unemployed.

Thus was born the Individualized Transitional Plan (ITP), which starts at age 13. The objective is to ready the child for adulthood by developing and achieving five goals, including bowel management and educational achievement. Goals also include transitional readiness (ie, do they know their medical history, can they make their own appointments and see the doctor without a parent present); meeting a parent-initiated goal (ie, showering without being told or learning how to cook); and a personal goal, such as learning to eat healthier. Hopson individualizes care to transform each goal into a measurable task and the results become a contract and framework for the next few years.

They also receive a transition binder that includes a career interest survey. “They complete it before they see me and then I help guide them,” Hopson said. She also ensures their career goals are realistic. For instance, one patient said he wanted to be the Marines, which she knew wasn’t possible. Instead, she suggested a meeting with a recruiter to discuss civilian jobs in the military.

About 45 percent of patients fall into the age group for the ITP, which is part of the clinic’s Lifetime Care Model (LCM). The LCM begins prenatally and continues throughout the adult years.[3] Hopson developed the ITP, which has generated great interest from other clinics in North America who are struggling with the challenges of implementing a meaningful transition program.

Since starting the program, Blount said, clinicians from throughout the country have contacted the team at Children’s to learn how to start their own program. “There’s such a need for a supportive multidisciplinary clinic to support these patients,” he said.

“This model could be replicated for other children with chronic conditions,” Hopson said. “If we’re doing our jobs well, our children are going to be adults. So we have some obligation to get them there in a way that provides a good quality of life.”

Bowel Management Program

Children with spina bifida are born with neurogenic bladder and bowel issues. While urination can be managed through catheterization, with children as young as 3 years old learning to catheterize themselves, “bowel management is much trickier,” Hopson said. Gastrointestinal motility slows and constipation becomes a chronic issue. Unfortunately, she said, many families prefer constipation to regular movements because it’s easier to handle. But “once you set up that pattern it’s hard to break,” she said. And bowel management, she said, “becomes the most important issue in whether they are able to get a job.”

Today, the children in the spina bifida clinic benefit from working with pediatric gastroenterologist Mitchell B. Cohen, M.D., and members of the Division of Physical Medicine and Rehabilitation. Cohen chairs the UAB Department of Pediatrics and is physician-in-chief at Children’s of Alabama. He became interested in the program after hearing Hopson speak. He developed a protocol beginning at age 4 to help families understand the importance of a bowel management program and try to end their reliance on constipation.

Nonetheless, it remains an “extraordinarily difficult problem,” Roque said. “There is no magic bullet.” Still, “with Cohen’s help we’re making inroads on this extraordinarily difficult problem that has profound impact that echoes through rest of a child’s care, including issues of self-image and self-worth.”

[1] Talamonti G, D’Aliberti G, Collice M. Myelomeningocele: Long-term neurosurgical treatment and follow-up in 202 patients. J Neurosurg 2007; 107: 368-86.

[2] Davis MC, Hopson BD, Blount J, et al. Predictors of permanent disability among adults with spinal dysraphism. J Neurosurg Spine. 2017 August ; 27(2): 169–177.

[3] Hopson B, Rocque BG, Joseph DB, et al. The development of a lifetime care model in comprehensive spina bifida care. J Ped Rehab Med. 2018; 11:323–334

January 16, 2020 by childrensal