Making the Care Switch

What teens with hemophilia should know before moving to an adult hematologist.

Doctor using digital tablet with teen patient and father
Teens with hemophilia and their parents have much to consider before making the switch from pediatric to adult care. (Stock Photo/Getty Images)

Many teens and young adults often find themselves in a predicament when it comes to their medical care: they’re too old to see a pediatrician, but are unsure about how to find a doctor who treats adult issues.

For those living with hemophilia, finding an adult hematologist is a critical step in ensuring continuation of care.  A doctor treating the inherited blood disorder is also a necessary resource in case of a medical emergency. But making the switch to adult care is a well-known challenge for some people living with hemophilia. The transition was a featured topic at this year’s World Hemophilia Congress in Glasgow, Scotland. In 2016, the American Society of Hematology put out a toolkit for doctors dealing with patients transitioning to adult care in an effort to eliminate what it called gaps in care.

Vita spoke to Dr. Blanca Salazar, a pediatric hematologist and CSL Behring’s Global Program Director in Hematology and Thrombosis  Research and Development, to find out what patients and their parents should know when making the transition.

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There Is No Perfect Time: Dr. Salazar, who practiced for 18 years in Mexico, says the definition of what age makes a child an adult can vary from country to country. But no matter the age, not everyone is ready at the same time. Dr. Salazar explains that many children with hemophilia have been seeing the same hematologist since the day they were born.

“When you’re a child, you have a different relationship with doctors and nurses than you do when you’re an adult,” she says. “So the change can be very hard.”

She advises parents against forcing a teen to make the switch. Also, the American Society of Hematology provides doctors with a “readiness assessment” for patients that can give healthcare providers a better idea on if they’re ready to move to adult care.

Parents Need to Prepare:  The switch can be difficult for parents as well. Salazar says many parents of children with hemophilia build a strong relationship and comfort level with their kids’ doctors and moving on can be a challenge.

To help manage the change for parents and teens, Salazar suggests psychological support in the form of a counselor may be necessary and helpful. Talking it through can help everyone be better emotionally prepared for the move.

Adult Care May Be Different: The issues adults with hemophilia face can be different in many ways and an age-appropriate doctor may be better-suited to address them, Dr. Salazar says. For example, people with hemophilia may face challenges with joint damage as they get older and an adult hematologist can be a helpful resource.

Relationships Can Continue:  The connection patients have with their pediatric doctor doesn’t necessarily have to end when adult care begins. Like many pediatric hematologists, Dr. Salazar says she keeps in touch with some of her former patients to offer them advice or support. She says the transition can be hard on doctors as well and she continues to treat the children she’s cared for like they were her own.