Common Themes and Conversational Strategies for Pediatric MS Care Transition

Vikram Bhise, MD

The transition from childhood to adulthood presents a multitude of challenges, particularly for those with pediatric multiple sclerosis (MS). It is vital to have a conversation about this process with teenagers, discussing priorities and concerns to ensure they receive adequate care and maintain good quality of life (QOL). 

At the 2021 Annual Meeting of the Consortium of Multiple Sclerosis Centers (CMSC), October 25-28, findings were presented from a qualitative study that sought to learn more about teenagers with MS and their perceptions of QOL, subsequently identifying any need for intervention or alterations to their overall care. Through a series of semi-structured interviews, investigators highlighted 4 key themes that affected teens’ QOL, and it was further stressed that a visit dedicated solely to discussing transition be timed correctly, involving both the patient and their family early in adolescence.

Vikram Bhise, MD, associate professor, pediatrics and neurology; and division director, division of child neurology and neurodevelopmental disabilities, Rutgers–Robert Wood Johnson Medical School, spoke with NeurologyLive on these themes, as well as strategies that clinicians can employ in conversation. In doing so, health care providers can work to ensure patients are receiving necessary care, have had ample time to process their diagnosis, and are adjusted to living with MS. 

NeurologyLive: Can you provide an overview of the study design? How were the interviews conducted?

Vikram Bhise, MD: It's a qualitative study, and we used qualitative methodology. We had our research assistants call up patients with pediatric onset MS and follow this semi-structured but fluid interview and ask them what was important for their quality of life and their needs to transition into their next steps.

What was very unique was that, compared to quantitative studies, this interview would change as we learn things, so people started telling us things that we hadn't anticipated that would become incorporated into our interviews, and [we would] start finding more and more information. 

We then took those interviews, had them transcribed and coded them in a team format, and a number of us would work together with students, fellows, and attendings from different disciplines, as well as an expert in qualitative methodology, to come up with coding. After we had finished all the interviews, we would go back and do another review of all the different pieces of information that we obtained and come up with overall themes. We then used those themes to describe how describe our findings, and our steps going forward.

What were the key findings? Were any surprising in any way?

I think probably the biggest element was that the teenagers really didn't have any of the language to discuss transition. We anticipated that there would be transition needs, that they were probably not all being met, and some people were doing better than the others. But we really found that the majority of people were really unable to discuss it in any meaningful way—they lacked completely the vocabulary. That was a big area of need, of just starting to get people involved at those early steps and saying, “These are the things that are available, and these are the things you should ask about.” We couldn't even say to them, “What do you need help doing?” and they would say, “I need help doing this.” That was not there. 

We also got a good sense that, for their qualitative needs, that a lot of teenagers were hyper focused on the physical aspects. That's not too surprising, but it was just important to hear directly. We get used to running a series of questions in our interviews in our offices with patients, and we might talk about fatigue and pain, but some of those things—which would be very important to adults with MS—didn't seem as important to them, at least not when they were discussing with us. Fatigue could be critical for maintaining your job as an adult, but if a teenager had a limp, or they couldn't use their hand, or something else that others could see, they really thought that was one of the biggest impacts on their lives. That really helped us focus on making sure we asked what was important to the patient themselves. 

We got a lot into [asking], “What does it take to be independent, and have control of your life?” What was it that got people to where they got to if they felt that they were successful? It was definitely having a positive outlook, engaging with the family, and reprioritizing their life. If the MS interfered with their lives, the ones who felt that they succeeded [felt it was] because they used it as a transformation—they found the growth beyond that. We thought that was an important point to explain to the families and say, “If you if you really want to maximize your chances of success, consider this as an opportunity to find some new things that are valuable to you.” The element of family was so overarchingly represented by the patients—the teenagers and young adults—that we looked at it the other way that if people didn't say that, that was probably going to be a big red flag. I do think that a lot of centers see that with their patients.

Confidence was an issue about disclosing to their peers, folks at their college, or if they were employed, their employers. We also found that the teenagers really wanted to hear the truth. We’re always kind of unsure about when to disclose things, to patients, if we're trying to be either very optimistic, or perhaps we want to give people the hard truth in the beginning, but they wanted both. They wanted to hear the good and the bad, pretty much from the get-go.

Transcript edited for clarity. For more coverage of CMSC 2021, click here.

REFERENCE

Veras JM, Thoby E, Nallapati S, Jimenez M, Bhise V. No one really plans to have multiple sclerosis: Transition readiness and quality of life in pediatric multiple sclerosis. Presented at: 2021 CMSC Annual Meeting; October 25-28. Abstract PSY06.