Not so long ago, few children with cystic fibrosis lived long enough to need the care of an obstetrician or other adult health specialist. Now, recent advances in treatment are extending the lives of children with serious chronic conditions, creating a wonderful new challenge.
How can we most effectively help pediatric patients and their families seamlessly manage the transition from adolescence into adulthood as they gain autonomy and begin taking day-to-day responsibility for their health and everyday life? To that end, Children's of Alabama and UAB Medicine have collaborated to create the Staging Transition for Every Patient (STEP) program.
"From muscular dystrophy, spina bifida, cerebral palsy, and cystic fibrosis to sickle cell, rare genetic disorders and type one diabetes, these patients require a broad range of specialized care to manage their condition," said Betsy Hopson, MSHA, Director of STEP. "Their pediatric team becomes almost like family. Patients and their families come to rely on that support, and it can be scary moving to something new.
"As they are becoming adults, they will need an adult healthcare specialty team that can offer the same range of support. That's what the STEP clinic provides. In addition to building a relationship with a primary care physician who will manage their overall care as their pediatrician previously did, the clinic gives them one-point access to a broad range of specialized health and support services to meet the specific needs of their condition. From nephrologists and neurologists to mental health and social workers, physical therapy and vocational therapy, it's all in one place."
The nature of some conditions can make transportation issues more difficult, which is another reason that it is helpful to have multiple providers in one location. Some conditions may also require additional support from social workers to assist in other aspects of moving into adult life, such as setting up necessary accommodations for education, living environments and work settings.
"Located at the Whittaker Clinic at UAB, the STEP clinic gives our patients a medical home where they can go for all their health care needs," Hopson said. "We don't want them to feel that the pediatric team they have relied on for years is abandoning them. We want them to see it as part of the process of growing into their new lives as adults.
"The planning for a smooth transition and developing more autonomy begins early, starting at around age 13 or 14. That's when we begin to assess the patient's readiness and identify the challenges we need to meet so we can begin setting goals and moving toward them."
The first step in preparation is to identify the types of referrals and specialists the patient will likely need for optimum care. The next consideration is what type of support or accommodations might be needed in education, career preparation or vocational rehabilitation to allow patients to maximize their abilities, pursue their interests and achieve quality of life.
"We work with patients and families to identify what's important to them," Hopson said. "We ask parents what their concerns are when they think of their children as adults. What skills will they need to learn to live independently? Sometimes it's basic life skills like making their bed, remembering to brush their teeth and take their medication, or learning how to make medical appointments.
"Depending on the condition, there may be specific skills they need to learn to protect their health when their parents are no longer there to read labels for allergens or to check their blood sugar, things like that.
"One of the most important steps in preparation for transitioning to adult care is developing an emergency plan. Patients new to the adult health care environment need to know what to do and where to go if they become ill."
In operation for just over a year, the clinic has streamlined the process of moving from pediatric to adult care by supporting close communication between pediatric and adult care teams.
"It isn't just a matter of passing medical records from one to the other," Hopson said. "The pediatrician and the primary care physician can actually discuss the more specific points of caring for that individual patient and following up on progress and any issues that might arise. The same goes for other members of the care team and their counterparts. The new team can take approaches that previously worked for that patient and emulate them."
Although there are transition programs for pediatric patients with specific conditions in other areas, the collaboration between Children's of Alabama and UAB to provide transition support for patients with many types of chronic conditions is a rare innovation.