Like fledglings perched on the edge of a nest, patients and families often feel nervous when they contemplate leaving the security of St. Jude Children’s Research Hospital. But as children move into adulthood, their medical needs change. A new program eases the transition to adult care for patients in the St. Jude Endocrine Clinic.
The clinic sees children, teens and young adults who are at risk for hormone problems related to their treatment or tumors. Many of these patients require lifelong hormone therapies. Others need ongoing screening to monitor for hormone problems.
Wassim Chemaitilly, MD, director of the St. Jude Endocrinology Division, notes that St. Jude handles nearly every detail of care for patients and their families.
“The mission of St. Jude is to provide the maximum support to patients and their families. Because of that, some of our patients have not performed, for many years, basic tasks related to their health care needs within their communities—tasks such as filling prescriptions in their local pharmacy or calling a doctor’s office to set up appointments,” he says. “We must provide them with tools to self-advocate and to navigate the health care system.”
Enter Endocrine physician assistant Karen Clark and Hematology social worker Margery Johnson.
During the past few years, they have worked on a quality improvement project through the St. Jude Evidence-based Practice Fellowship. The project involves helping adolescent and young adult endocrine patients make the transition to adult endocrinologists.
“The idea of seeking services elsewhere is anxiety provoking because they get good care at St. Jude, and they know everybody. It’s hard to know how or where to start to establish community-based care again,” Johnson says.
And yet, the shift is necessary.
“We’re pediatric providers, and there are benefits and therapies available through adult endocrinologists that we’re not able to offer,” Clark explains.
Sixteen-year-old Nayla Bandealy’s mom is a nurse, and her dad is a doctor. Ten years ago, when Nayla was diagnosed with the brain tumor medulloblastoma, her family turned to St. Jude. Like a warm blanket, the hospital’s staff provided comfort and security along with world-class treatment.
Even though Nayla’s parents work in the health care field, they do not relish the thought of transitioning to adult endocrinology care.
“The best place for her has been St. Jude,” says Nayla’s mom, Maria. “They know what to do. They know her history, and they have taken such good care of her. They have given us hope.”
When Clark and Johnson began to design a transition program, they turned to the experts: patients and their families. With their input, the duo designed a simple checklist that includes a series of tasks for patients to complete over a two-year period and resources to assist them.
“This helps patients understand that transition is a process over time, and not a one-time event,” Clark says.
During the first year, patients use the checklist to identify a primary care physician and an adult endocrinologist: check. To acquire insurance: check. To make medical appointments, manage their own medicines, get refills and complete other health-related tasks: check, check, check, check.
The second year, patients learn about obtaining referrals, scheduling new-patient visits and gathering information to share with community providers. Finally, after visiting with their adult endocrinologists, patients have their last appointment in the St. Jude Endocrine Clinic. Staff members ensure that the transfer is proceeding smoothly and assist with any final details.
“Afterward, we remain available to families and their providers,” Clark says. “We’re happy to answer questions regarding screening recommendations, offer advice or help them understand what to expect in the future.”
Grown and flown
Letting go can be challenging, but also exciting.
“This transition program is a great thing. It’s time for him to handle health on his own,” one mom told Clark.
Another parent said, “I think it’s wonderful that you are staying on top of this planning.”
Johnson and her colleagues have begun working with St. Jude families to introduce the transition program for patients in other areas of the hospital.
“The goal is to empower 16-, 17- and 18-year-olds to start doing some of these things themselves,” she says.
As for Nayla Bandealy, she has already checked several items off her list. She and her parents have identified a primary care physician and a gynecologist who will take care of her after the transition. She knows her medical history and is taking steps to ensure that she remains healthy throughout adulthood.
She’s nearly ready to fly.
Reprinted from Promise, Summer 2015