Inside Pediatrics Winter 2021

ONE STEP AT A TIME

Managing the transition from pediatric to adult health care

A collaboration between Children’s of Alabama and the University of Alabama at Birmingham is helping adolescent patients with chronic and complex childhood medical conditions transition to adult health care. The Staging Transition for Every Patient (STEP) Program opened in September 2020 in the Whitaker Clinic of UAB Hospital. The two initiatives included in STEP are: • individualized transition planning for adolescent patients (beginning around age 14) with complex and chronic health care needs currently treated at Children’s of Alabama to prepare them for adult health care, and • a primary care clinic that will serve as an adult medical home to facilitate referrals to specialists, ensuring timely uninterrupted transition and access to other support services, including physical therapy, social work, nutrition and emergency planning. “Children diagnosed with chronic conditions often need to continue managing these diseases into adulthood. Many of these conditions were historically associated with shortened life spans—for example, cerebral palsy, spina bifida, rare genetic disorders—but now these patients have increased life expectancy due to treatment advances. Therefore, we see an increasing need to develop adult healthcare specialty clinics for these patients as they grow older,” said Carlie Stein, M.D., lead physician and medical director for the STEP Program. The program will help patients make the transition to an adult care model, including the transfer of responsibility for healthcare-related decisions from the parent or caregiver to the individual. “We will work with patients, encouraging them to practice the skills necessary to take responsibility for their own health—how to make appointments, how to get their medications from the pharmacy—as a way to foster their independence as they grow into adulthood,” said Betsy Hopson, program director. Children’s and UAB already share staff and facilities, but the STEP Program is the first formal program of its kind

in Alabama and the surrounding region. This transition of care ensures that patients are matched with primary care physicians who are prepared to handle complex medical conditions, because not all primary care physicians are experienced in treating chronic diseases stemming from childhood, and patients with chronic diseases don’t always need to see a specialist. The STEP Program involves work at both Children’s and UAB. Children’s has a role to play in making sure patients are ready for transition, while UAB must provide a landing zone for those patients. Transition involves the full process of getting patients ready for adult care, while the transfer of care involves the final visit to Children’s and the first visit to UAB. In its first full year, the STEP Program worked to develop partnerships across both health systems. Approximately 50 Children’s physicians and staff joined a transition working group to champion the effort of transition readiness planning. Many clinics are joining in this effort, including Type 1 Diabetes, the Pediatric Inflammatory Bowel Disease (IBD) Clinic, Rehabilitation Medicine Clinics, Adolescent Medicine, Family Clinic, Renal Transplant, Muscular Dystrophy Clinic, Epilepsy, the Pulmonary Technology Dependence Program and Asthma, as well as clinics already involved in transition, such as Spina Bifida, Cystic Fibrosis and Sickle Cell. Also, in the first year, the STEP Program worked with 169 patients who were fully transitioned from Children’s into the UAB system. These patients were seen by primary care and often by many other specialists across UAB. In addition to the standard clinic, the STEP Program has now developed partnership clinics with Rehabilitation Medicine, Neurology/ Epilepsy, Neurology/Neuromuscular, Pulmonary, Palliative Care and Nephrology/Renal Transplant, where transition is being done jointly through multidisciplinary care. Patients are also seen by Social Work and Physical Therapy. Patients can get a referral to the STEP Program from their Children’s specialist or their pediatrician, or they can self-refer.

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