It’s a bittersweet visit for Justin Flowers, as he arrives at St. Jude Children’s Research Hospital for one of his final checkups in the sickle cell clinic. After 18 years at St. Jude, Justin is transitioning to adult care.
This fall, the St. Jude-Methodist Sickle Cell Disease Transition Clinic will be Justin’s new medical home. The clinic is aimed at reversing poor transition rates among teens and young adults. The program helps 18-year-olds make the leap from St. Jude to adult-care facilities of their choice.
“It’s scary when I think about leaving St. Jude because I’ve been here for so long. The staff is like my extended family,” Justin says.
His physician, Jane Hankins, MD, of St. Jude Hematology, enters Justin’s exam room and offers news about his progress.
“Your labs are good today. Your red blood cells look great,” says Hankins, who serves as medical director of the transition program, a joint effort with Methodist University Hospital in Memphis. “You’re picture perfect for where you should be with your type of sickle cell disease.”
Justin inherited a subtype known as hemoglobin SC. Without warning, his round, flexible red blood cells become stiff and banana-shaped, blocking blood flow to his organs and tissues. Often, the result is debilitating pain and lengthy hospital stays.
Grooming health advocates
Clinicians hope the transition program for 12- to 18-year-olds will become a national model for similar programs that encourage teens with sickle cell disease to continue their treatment as adults.
“Historically, many children nationwide haven’t made smooth transitions to adult sickle cell programs,” Hankins says. “They’ve ended up either dying or hopping from emergency department to emergency department until they’ve finally found suitable medical homes for their continued care. This may take many years and may have clinical, social and economic consequences for both the patients and for society in general.”
When Justin entered the hospital’s transition program, his family immediately immersed themselves in its educational offerings and tailored interventions. It was the first step to addressing the underlying factors that can cause patients to abandon treatment. Such risk factors may include lack of follow-up adult care, medical insurance issues or lack of family support.
“I was encouraged early on to learn and write down everything about Justin’s treatment,” says his mother, Juanita Vann. “I have my own medical chart at home detailing his treatment since he was very young, and I plan to pass it down to him to continue as he transitions.”
Using a curriculum developed by the St. Jude Hematology department, the social worker, physician assistant, academic coordinator, psychologist and nurses on Justin’s transition team have guided him through the preparation period. This guidance facilitates a gradual shift in medical responsibility from the parents to the patient.
“We hope to have a new generation of well-prepared, more conscientious teenagers who will make responsible decisions about their health,” Hankins says. “By having a transition clinic that bridges well pediatric care to adult care, we can make teens feel comfortable about continuing their health care and give them fewer reasons to abandon their sickle cell treatment.”
Justin learned to communicate with adult care providers about his medical complications, immunization records and lab reports and began attending clinic visits on his own.
“I checked myself in, filled out my personal health record and answered questions about my blood type, the type of sickle cell disease I have and what precautions I should take if I go into a crisis when I’m alone,” he explains. “They also sent me to the genetic counselor, who quizzed me about the risks of having sickle cell disease.”
The curriculum also addresses peer relationships, nutrition, stroke risk, the benefits of exercise, and the effects of substance abuse on teens with sickle cell disease.
“Education is just as important as treatment itself,” says Justin’s case manager, Sheila Anderson, RN. “It helps patients follow the regimen that we plan for them and also makes them aware of when to seek medical attention. We want them to take control of managing their health.”
Since 2007, St. Jude has taken teenaged patients on tours of local adult sickle cell care providers. These tours offer teens a glimpse of life as adult survivors. They learn about available services, express their concerns about transitioning and hear testimonials from adults with sickle cell disease.
Since implementing the tour program, transition rates from St. Jude to adult care facilities have increased from less than 15 percent to more than 75 percent.
After transitioning, the focus shifts to compliance. Recognizing the affinity most teens have for technology, the transition team collaborated with the hospital’s Information Sciences staff to create a text-messaging system. This system encourages medication compliance for teens who take hydroxyurea, a drug that reduces the percentage of sickled cells.
Teens craft their own messages and decide how often to receive them. Justin draws his smartphone from his pocket and retrieves the text that alerts him every morning: “Hey you, take your medicine,” it reads.
Another technical lure is a virtual mentorship program. Adults with sickle cell disease undergo extensive training before embarking on an online mentoring program with teens. They communicate regularly with their mentees, reinforcing the importance of medication compliance and follow-up care.
Looking to the future
Thanks to the transition clinic, new data will be accessible to Hankins and her team as they cultivate the program and report their research findings to the medical community. Early signs indicate the clinic is proving effective.
“Several patients who left St. Jude at 18 had not identified an adult doctor or received the proper follow-up care,” Hankins says. “They heard about the transition clinic and called to schedule appointments. Now we have a seamless process for monitoring their progress once they leave St. Jude.”
Justin’s adult care treatment plan will mirror what he received at St. Jude. Hankins and Anderson will join him on initial visits and will assume a supportive role thereafter, as he consults with his adult doctor.
With his sights set on college, Justin is ready for the next chapter in his life and the responsibility of driving his own medical care.
“It will be different, but I’m ready,” he says. “This is something that my mom and St. Jude have prepared me for my whole life.”
Reprinted from Promise Summer 2012