Questions to Ask When Transitioning to Adult Sickle Cell Care
More Programs and Publications Featuring Dr. Marwan Shaikh
In this program:
Pediatric sickle cell disease patients have key questions to ask before transitioning to adult care. Dr. Marwan Shaikh and hematology nurse practitioner Maya Bloomberg offer advice on questions to ask providers, online resources for locating sickle cell care, which specialists are trained in SCD, and the latest treatments to ensure your specialist is aware of.
Transcript
Ariqa Everett:
What questions should pediatric hematology patients ask when trying to find an adult hematologist? Is there a national registry to look up an adult hematologist for pediatric patients leading to the transition to adult care?
Dr. Marwan Shaikh:
So I think that's a really good question. I mean, if you have a good relationship with your pediatric hematologist, I think the one step is just to start there and see who they would recommend and how as a start. And if that doesn't kind of pan out, then they are...organizations of sickle cell in the Sickle Cell Disease Association of America, they have a website, and you can actually go through it by state and then see what providers are available. Another resource that I would recommend is just going to your local health system or to their website and seeing if there's anyone who specifically goes to sickle or deals with sickle cell disease or has an interest in that. And coming back to training, we as hematologist-oncologists, anyone who has a board certification in hematology is trained in sickle cell disease.
It's on the board exams. There's material on it. It's a good portion, it's not some small thing that's kind of hidden so anyone...even if you just find a hematologist to start with, go see them. And then use that as a starting point, at least to get started, and if they're not feeling comfortable, but then they can go on to finding you another resource.
Maya Bloomberg, APRN:
There's also a new alliance, it's called the National Alliance of Sickle Cell Centers (NASCC), and they're helping designate different comprehensive sickle centers across the country. So I think there are around 30 centers that have been identified, thus far. University of Miami, Jackson were the one, but I think going on the website and trying to locate when it's important because it'll help you find a sensor, do they have infusion sensor capabilities, because sometimes we can prevent hospitalizations and her visits just bringing a patient in for outpatient or dehydration and pain management. Is there a multi-disciplinary approach? We talked about other complications you can have with sickle cell, but what happens when you diagnose a complication, who are you going to send them to? So having a center that has pulmonologist with a specific interest for sickle cell, pulmonary hypertension, having a specific nephrologist, having a specific orthopedic to deal with your vascular necrosis, these are all things that you want to have in your mind when you're transitioning to an adult provider and see what the capabilities of that sector is. So I would definitely look on these websites to try to find a comprehensive center, but questions definitely ask your pediatric hematologist, because our pediatric counterparts transition straight to us on the adult side of the world are going to try to come to their last appointment or two just so they can have a familiar face.
Because you can imagine you've been dealing with the pediatric hematologist your entire life, and now all of a sudden you switch into the dark side of the adult world that...it can definitely be intimidating. So I think sometimes introducing yourself and realizing that for people and their family who are not as threatening is just going to help that and prove the chances of success. But I think it's important to know who...where the referrals meet, is there outpatient and infusion center capabilities, what treatments are they aware of? Because we have three new treatments that were all introduced less than five years ago and two of them in 2019 at the end of the year, but not all providers are aware of it. So you want to make sure that if you are seeing a hematologist, they are aware of crizanlizumab or Adakveo, because it's only been available for two years that I do with a provider who, yes, they pass their board exam in hematology. But they're not keeping up with all of the new therapies, then you're almost doing yourself a disservice, because you're limiting yourself for what treatments could potentially benefit you.
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