The associate professor of pediatrics and neurology at Rutgers–Robert Wood Johnson Medical School discussed findings from a qualitative study that aimed at understanding priorities and concerns within this patient population during a transitional period.
WATCH TIME: 8 minutes
“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 and that they were probably not all being met, and that some people were doing better than others. But we really found that the majority of people were unable to discuss 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.’”
Following the 2021 Annual Meeting of the Consortium of Multiple Sclerosis Centers (CMSC), October 25-28, Vikram Bhise, MD, associate professor, pediatrics and neurology; and division director, division of child neurology and neurodevelopmental disabilities, Rutgers–Robert Wood Johnson Medical School, sat down with NeurologyLive to discuss transition readiness for patients with pediatric multiple sclerosis (MS).
Bhise outlined the qualitative study, where investigators conducted in-depth, semi-structured interviews with patients with pediatric MS between the ages of 15-26 years. Discussing key findings, Bhise commented on patient responses, which highlighted the importance of timing transitional discussions, as teenagers reported that they felt ready for their parents to start sharing information and teaching them more about their condition. Investigators also found that teenagers often didn’t have the language to have these meaningful conversations and were often “hyper-focused” on physical aspects, which Bhise noted was not surprising but important to hear patients vocalize.
Interaction with family was also found to be vital, with the element of family being an overarching theme, and confidence was an issue when disclosing details about MS to peers or employers. Patients did, however, want to know the truth about their condition, with Bhise noting, “They wanted to hear the good and the bad, pretty much from the get-go.”