General Updates | Navigating the challenging transition from pediatric to adult care in patients with SCD

So I think one of the interesting things, and this came up again at the ASCAT meeting, was some of those transition barriers occur a little earlier than we think. So we think about transition at like 18, 20, 21 into an adult program. But some of those patients are lost a little earlier, so even starting by age 14, where they’re not necessarily coming to visits on the pediatric side, and then when they get to that transition age, they’re already lost and don’t show back up until they’re like 21, 22, 25, where they start having major complications. So I think one of those challenges is really identifying those high-risk patients early. 

The other barriers are, I think, if you’ve had the same team taking care of you since you were, you know, that you can remember your entire life, building those relationships, developing trust and meeting those teams early on, I think is really important too, so that you can feel like you can have that smooth, comfortable transition and develop those same types of relationships with the adult world, but they take time. And especially if you’ve seen the same group for as long as you can remember, that’s a challenge having to develop those new connections and relationships. 

There is a new publication that came out of the National Alliance of Sickle Cell Centers that looks… I think one of the things is we all talk about transition as kind of this entity, but we haven’t even had standard definitions of how we look at transition. What is transfer of care? What is true transition? And how do you define transfer versus transition? So transfers, you get to that first or second appointment. Transition is that on the adult side, you truly identify a medical home, that you know that there’s a group that’s there to take care of you, you can identify who you see for your sickle management, who you see for your kidney management, who you see for whatever other complications you might have, and feeling like they’re your medical home, feeling like there’s a group that can take care of you. And really, you can reach out to them as your place to really get those connections. 

So I think I would highlight that recent publication from the National Alliance that actually finally defines those things for us so that we can start looking at it structurally in the same way. So we can start having the same definitions and say, okay, here’s the barrier to transfer. Here’s the barrier to transition. How often are people really attending all those follow-up appointments? And is it the first appointment that’s a problem? Or is it in year two or three where you become maybe less engaged? And what are the things that people are seeing around that time? 

I think the other part is sometimes you don’t have anybody to transition to. So we’re starting to build more and more community, but having adult providers that are well-versed in sickle cell disease and have a true comprehensive center, not just a clinic, is very difficult. And there are not enough of those places. So I think one of those… that’s one of those other big challenges during that period. And the adult hospitals definitely feel different. The feel is different. The approach is different. The people are different. And the priority sometimes in really busy spaces in the adult world can feel very overwhelming and challenging to try to get care for chronic illness, for all chronic illness.

This transcript is AI-generated. While we strive for accuracy, please verify this copy with the video.