General Updates | Approaching the transition from pediatric to adult care in patients with thalassemia

I think there’s a lot of gaps and a lot of opportunities to improve transitions of care. First, I want to just mention that we’ve seen now over the past several decades that the patient population for thalassemia is thankfully aging deep into adulthood because of improvements in blood supply as well as more options for iron chelation and better understanding of managing iron overload. And these had historically been kind of the life-limiting morbidities related to thalassemia. And so we’ve seen extensions in life expectancy over the past several decades. We’re now coming to a point where the supply of adult hematologists who are well-versed and experienced in managing thalassemia has not really kept up with the demand. And so, you know, we desperately need adult providers who are well-versed in the proper screening of morbidities associated with thalassemia, associated with iron overload as well. So, you know, I think we’re now observing a growing population of patients with thalassemia in their adolescence and their young adulthood, which is a key period of time for thinking about transitions of care, particularly just because they’re, you know, coming up to the age where they may start to encounter comorbidities related to or unrelated to thalassemia. And so they really need to have a medical team that’s well-versed in the management and the screening of these problems. 

So I think an effective way of transitioning is to really have a close collaboration between the pediatric and adult medical teams at the time of transitions, utilizing things like warm handoffs to make sure that everybody is comfortable with the clinical history and the complications for each individual patient. So at our center, we, you know, at the Hospital of the University of Pennsylvania, we routinely meet with our colleagues at the Children’s Hospital of Philadelphia to learn more about each patient who’s being considered for transition, review their clinical course, and to learn from their experience and guidance as well. And so I think this kind of teamwork really strengthens not only our understanding of the patients who we’ll be kind of managing in their adulthood, but also strengthens the patient’s confidence in the new team and allows for this ongoing dynamic conversation between the different longitudinal teams to optimize and guide complex decisions in the clinical management of these patients.

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