A collaboration between Children’s of Alabama and UAB Medicine is helping young adult patients with chronic and complex childhood medical conditions transition to adult health care. This can be difficult for both patients and their families due to medical and insurance changes.
The Staging Transition for Every Patient (STEP) Program opened September 2 in UAB Medicine’s Whitaker Clinic of UAB Hospital. The two initiatives included in STEP are:
• Individualized transition planning beginning around age 14 for adolescent patients with complex and chronic health care needs currently treated at Children’s of Alabama to prepare them for adult health care
• 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,” says Carlie Stein, M.D., assistant professor of Internal Medicine in the Department of Medicine and medical director for the STEP Program. “Many of these conditions were historically associated with shortened lifespans—for example, cerebral palsy, spina bifida, congenital heart disease—but now these patients have increased life expectancy due to treatment advances. Therefore, we see an increasing need to develop adult health care specialty clinics for these patients as they grow older.”
The program helps patients make the transition to an adult care model, including the transfer of responsibility for health care-related decisions from the parent or caregiver to the individual. “We 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,” says 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 manage complex medical conditions originating in childhood as many patients struggle to find adult doctors as they age out of pediatric care.
Patients can get a referral to the STEP Program from their Children’s specialist or their pediatrician. Patients with a complex or chronic disease of childhood and who are at least 18 years old can call the UAB Primary Care Access Center to schedule a new patient appointment with the STEP Clinic at 205-801-7474. ~Bob Shepard