Helping Teens With Sickle Cell Disease Transition to Adulthood

Helping Teens With Sickle Cell Disease Transition to Adulthood

Program teaching adolescent patients to manage their care as adults

Christian Beauchamp considers himself one of the lucky ones.

Once a month, the college sophomore spends anywhere from 90 minutes to six hours in his doctor’s office receiving a life-preserving blood transfusion.

He was born with sickle cell disease, an inherited blood disorder that destroys and warps the body’s red blood cells so badly that some patients are susceptible to strokes even as children. Adults and children with the disease can also experience excruciating attacks called sickle cell crises.

Infusions are necessary to stave off those and other complications.

For his whole life before college, Christian received care at the St. Jude Affiliate Clinic at Our Lady of the Lake Children’s Hospital. Now he’s an adult, and finding reliable care is difficult.

But a program started in 2011 at the St. Jude Affiliate Clinic to help sickle cell patients transition to adult care is making Christian’s life easier.

After graduating with honors from Baton Rouge Magnet High School, Christian had plenty of scholarship offers. He chose Washington University in St. Louis, Mo., where he found a doctor who could provide the kind of consistent, experienced care he received as a child in Baton Rouge.

The transition program helped him prepare to make his own doctor’s appointments and to manage his own healthcare.

“I’m still in a bit of a process, but I’m totally comfortable compared to the first few times I went to the doctor myself,” he says.

A lifetime of care

The need for transition of care has been growing nationwide for over a decade, and for the past five years it’s become a priority at Our Lady of the Lake Children’s Hospital, says Chief Medical Officer Shaun Kemmerly, MD.

“Children who previously would have succumbed to illnesses are surviving longer than ever because of advances in healthcare,” Dr. Kemmerly says.

This means more adolescents with complicated health conditions grow into adults and find themselves searching for a provider prepared to treat a complex medical condition.

Even a condition as common as diabetes presents transition challenges, Dr. Kemmerly says. Most children have Type 1 diabetes, while the majority of adults treated by internists are Type 2.

"A rotten disease to have"

The St. Jude Affiliate Clinic at Our Lady of the Lake Children’s Hospital treats about 300 children and adolescents per year with sickle cell disease.

Patients begin treatment when they are very young and continue in the clinic’s care until they become adults.

“We keep them healthy,” says Jessica Templet, a physician’s assistant in pediatric hematology-oncology at the clinic.

“We want to make the patients becoming young adults very aware of their chronic illness,” Templet says. “We want to make sure that the transition is smooth.”

Studies show that young adults ages 18 to 24 with sickle cell disease have an unusually high incidence of death, says Templet.

“If we make patients more aware of their disease and the complications, and they are able to advocate for themselves, they can successfully transition into adulthood,” she notes.

Our Lady of the Lake Adult Sickle Cell Clinic’s Tanisha Smith, nurse practitioner and oncology program coordinator, says that before the transition program, young adults and their parents had to search for care during the most dangerous period of their lives.

Without proper care and management, sickle cell patients can suffer from complications such as iron overload, which can result from receiving too much blood through transfusions in a short period of time. If they go to the emergency room during a crisis, caregivers unfamiliar with either the condition or the patient might perceive the individuals as “drug seeking” and withhold pain-relieving medication.

For adults, complications include liver and other organ failure.

“It’s a pretty rotten disease to have,” says Smith.

Successful transition

Christian Beauchamp’s adulthood is going remarkably well considering the risks. There was a time that his mom, Santa Beauchamp, worried what kind of life was ahead for her son. As transfusions supervisor at Our Lady of the Lake’s Blood Donor Center, she knew all too well how difficult life can be for sickle cell patients.

Despite Christian’s relatively good health, he experienced many complications during childhood and required frequent, sometimes intensive, care. Christian was routinely hospitalized as many as five days at a time for a fever because of his compromised immune system.

Thanks to his parents ensuring he received consistent care as a child, Christian today feels well.

“I feel healthy day to day,” he says. “I’ve never considered myself to be a sick person, and I’m always aware it could be worse than it is.”

The St. Jude Baton Rouge Affiliate Clinic at Our Lady of the Lake Children’s Hospital provides a program that helps patients with sickle cell transition from pediatric care to adult care.

  • Clinic team members start the journey with patients in their early teens to help them understand their disease.
  • Patients are assigned a transition team made up of a physician’s assistant, a social worker, a nurse and a child life specialist. Team members see the patient separately to talk about various aspects of the disease and the transition to adulthood.
  • Patients attend a series of 10 visits that begin after their 15th birthday and end when they graduate from high school.
  • At the final two or three of those visits, a caregiver from Our Lady of the Lake Sickle Cell Clinic meets with the patient and establishes a relationship.
  • By the time the patient graduates from high school, they have a sickle cell care plan and goals.
  • When they turn 18, they become a patient of Our Lady of the Lake Adult Sickle Cell Clinic and work to become confident to assume responsibility for their healthcare needs.