General Updates | Approaching the transition from pediatric to adult care in patients with sickle cell disease

So the transition of sickle cell disease patients from pediatric care services to adult services can be quite a challenging period. It is a critical period for those young adults. They often find that there can be certain fears or anxieties around the time of transitioning from children’s hospitals to adult hospitals, mainly because of fear of losing that long-term relationship with the pediatric providers, of having that fear of losing the trust that they have developed throughout the years. Some of them also find that they are suddenly faced with a lot of challenges of that age anyway. So it’s quite difficult being a teenager generally, let alone having to navigate a complex healthcare condition such as sickle cell disease. Now we know because of the historical advances in children’s care, sickle cell disease is no longer a life-threatening childhood disease. Instead, it is now a chronic life condition with life-threatening complications. Advances such as penicillin prophylaxis, vaccinations, and stroke prevention mean that 95% of children with sickle cell disease live and survive well into their adulthood. So then they tend to develop accumulated comorbidities throughout these years as they grow into adulthood, but also they can accumulate some psychological challenges and some maybe socioeconomic challenges as well, including some other academic and physical changes. So it’s safe to say that the transition period through adolescence is a very delicate and difficult time for most people with chronic health conditions, including sickle cell disease. 

So as clinicians, I think our main goal is to ensure that we first of all start preparing these young adults very early on. So in our center, we start at the age of 12 years, just to talk about transition and to explain to them what we expect to achieve in the next few years until they are ready enough to go into adult services. So one of the things we always talk about is increasing self-advocacy, increasing confidence, and those things come along with good knowledge about sickle cell disease. So in the preparation period, as clinicians, we need to ensure that we identify any gaps in their knowledge, rectify those gaps straight away, immediately, and also see if there are any other concerns in that young adult because not one size fits all in transition. Some young adults are very concerned about their physical appearances, their societal relationships, while others are more concerned about their mental health and their academic progress, etc. 

So having a process that identifies these concerns and their gaps quite early allows us to, if you want, tailor a transition program that is individualized for that person. And that patient with sickle cell disease needs to be at the heart of this, so this has to be patient-centered and it has to be as tailored as possible to these young individuals so that they can grow into more independent, more self-confident young adults that are hopefully going to be well integrated into adult services. So our goal is to have a young adult who understands their condition, is quite knowledgeable, who understands self-advocacy and confidence and independence, who is seamlessly integrated into an adult service without gaps in their attendance, without gaps in their medication adherence, and also somebody who wants to lead a good, fulfilling life with sickle cell disease and not in spite of sickle cell disease. So that would be our goal. And that’s, in my view, how we say that we have had a successful transition for a young adult. 

And the way we achieve it is variable. But we, for example, have a transition tool that we use to assess these young adults and then create a tailored program around them and then, you know, have a multidisciplinary team around the young adult to allow them to progress seamlessly and that consists of pediatric providers, adult providers, nurses, psychologists, etc., but I think you can still achieve successful transition even if you don’t have that setting, as long as you have a good intention to start early and build slowly to make sure that the young adults develop the skills necessary to help them lead a good adult life that is completely well integrated and as safe as possible for them.

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