Vikram Bhise, MD, outlined useful questions to include in conversation when discussing the transition to adulthood for patients with pediatric multiple sclerosis.
Timing conversations for adolescents with pediatric multiple sclerosis (MS) is vital, as opening up discussion too early or too late can hinder care during the transition to adulthood. Findings from a recent study presented at the 2021 Annual Meeting of the Consortium of Multiple Sclerosis Centers (CMSC), October 25-28, outlined 4 common themes that arose when investigators conducted in-depth, semi-structured interviews with patients between the ages of 15 and 26 years.
Following the interview process, it was concluded that patients needed time to process and adjust to living with MS, and physical symptoms seemed to be most commonly impacting perceived quality of life (QOL). Additionally, positive family engagement and participation was beneficial to QOL, and teenagers’ lack of knowledge and language to discuss the condition were noted as a barrier to disease management.
To address identified themes, investigators stressed the need to schedule a dedicated transition visit to focus on the transition period and strategies to manage the condition and associated physical symptoms. Vikram Bhise, MD, associate professor, pediatrics and neurology; and division director, division of child neurology and neurodevelopmental disabilities, Rutgers–Robert Wood Johnson Medical School, commented on findings from the qualitative study, further highlighting conversational topics and tactics to employ when speaking with adolescent patients. While there is additional research necessitated, listening for signs and identifying when teenagers are ready to learn more about their condition may be integral to success.
Vikram Bhise, MD: We found that when we asked the teenagers if they felt independent, we imagined—and this would have been a bias on our part—that independence was being on your own, having your own job, making your own money, living apart. Perhaps that's part of our culture, or our regional culture, but that's not what they felt. They really did feel independent, even if they lived with their families. We thought of that as a change in their identity, or a change in their definition of what it really means to be independent. That was important, that really challenged the way that we thought about, and we started thinking that perhaps we were maybe approaching things wrong, that maybe we thought there was a problem when there wasn't one.
One of the other big things that we asked was, “What can we do to get you there? You have these challenges; we want to get you there successfully.” All the patients really loved that their families were involved, but they also felt that they could be too involved. That's not too surprising, but it wasn't that they felt that they were being crowded, or over managed, it's just that they didn't have the opportunity to learn how to do those things themselves. And MS, in many ways, can force a lot of people to mature earlier than then they'd want to, or that they ought to, but a lot of them felt that at some point—not too early—but at some point, they were ready for that. That opportunity was being missed. That was one of the big things that being hypothesis-generating elements here—when is that right point? They definitely expressed to us that if the parents could start sharing those elements with them, or teaching them how to do things, that could lead to substantial changes.
A lot of it, and I don't have a defined point—hopefully, that's something we can figure out in further studies—is listening very carefully for that point where teenagers are ready to listen. There may be a sense in the beginning that it's just too overwhelming, or they know that their parents are taking care of it, or the perhaps they're in a bit of denial, or just that they want some time to process things. Listening for that point when they're there, and they're starting to engage in visits and saying, “Okay, maybe now is a good time to talk about transition,” and bringing up [the topic] with the patient and families together, saying, “Let's make an additional visit.” Let's not take away from the care that you're already providing, for the physicians, that you're not going to shortcut one visit. I tell the families, “Next time you come by, we're going to do an additional visit, and when you walk in the door, we're going to talk about transition. If I start talking about other stuff—unless there's something critical going on—let's just put that to the side. We can make another visit in a couple weeks or whenever we need, and we just focus on where you are right now, and where you need to get.” You create a pure transition visit, and it doesn't have to be the only 1, there can be more than 1, depending on how it goes, and you just ask, “What are your goals?” You ask the teenager, you ask the family, “Where do you want to get to? Are you happy with where you are now?” Then going in a step-by-step fashion, through all the things that they should consider—and that's the way that we created the handout to be, that you would actually ask each question on that.
Maybe they say, “Yeah, I thought about that—no problem, next.” So, if they have an IEP [Individualized Education Program] or 529 plan, saying, “Do you have something similar set up at the college? Yes? Okay, let’s go onto the next one. No, you haven't even thought about that? Well, have you thought about talking to the dean of the college? Have you thought about talking to their financial aid services? Have you thought about talking to their health services? A lot of the colleges actually have different departments, and you need to talk to each 1 of them. Have you thought about what happens if you get sick there? Do they have a nurse on campus?" And especially if the school or the workplace is somewhere further away from where they live now—do they have a local ER? What are they going to do to help the remind them to take their medicines? Where are they going to pick it up from?
Just going through stuff that might seem common sense, but you put all the commonsense stuff together so that you go through an organized way. Invariably, you'll always find somebody say, “Oh, yeah, I hadn't thought about that. Let me just double check.” I think that will go a long way; it's probably not everything we need, I think they'll probably be a lot more work to do with transition services, and I know a lot of programs work really well with connecting to their adult programs and having combined visits. So, there's a lot of very good models out there, but really working through those 1 on 1 and dedicating these visits—particularly for MS issues, in the sense that someone can have a relapse, that someone has to really maintain their medicine—as part of elements that really keep the disease under as good control as it can be. Also, emphasizing with people that their outlook, their sense of involvement, really does make an impact, or probably makes a big impact, on how likely they are to get to those outcomes.
Transcript edited for clarity. For more coverage of CMSC 2021, click here.