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Pediatric patients with multiple sclerosis transitioning to adult care need a long-term, interdisciplinary clinical team that involves their families.

Young patients with multiple sclerosis (MS) transitioning to adult care are vulnerable and need ongoing, coordinated support, but MS transition practices vary widely throughout the United States, with challenges and shortcomings.

In a survey of transitional practices in the U.S. Network of Pediatric MS Centers, Aaron Abrams, MD, and colleagues found that half the sites accept new referrals up to age 18, and half accept older patients.

The typical transition age at half the centers was 22, with one site (10%) beginning transition conversations with patients as young as 15 and another delaying transition until 26. Seven sites have no formal transition protocol; four typically transition their young patients to the same professional in an adult setting, and five transfer them to adult MS colleagues within the same institution. Only six sites reported having adequate support to assist families with the transition process. All sites expressed interest in having a formal pediatric MS transition readiness guide.

The findings were published in Neurology.

Pediatric neurologist Tyler J. Allison, MD, who was not involved in the study, talked with Physician’s Weekly (PW) about how neurologists can effectively help their pediatric patients with MS transition to adult care.

How can neurologists optimize the transition of MS care?

Dr. Allison: There are many things to consider when children transition into adult care. I think the first step is always to start early. I start telling patients at age 15 what the transition process looks like at my hospital so they are prepared. Knowing the plan usually sets expectations and reduces anxiety for patients and their families as they get closer to 18.

The second part is to be flexible in what you offer. I generally want my patients with MS to be stable on medications before I transition them to adult professionals, but that’s not always possible before they get to an age where adult complications, like wanting to have kids, come into play. An adult neurologist would have more expertise there. I am also a lot more flexible with children going to college nearby but plan to move away for work after school.

So, while 22 years of age is the cutoff at my hospital for long-term care, if patients approach that age and tell me they plan to move five states away in a year, I might follow them for an extra year.

Do changes in the brain of pediatric patients with MS affect the disease trajectory?

Unfortunately, their disease is more active for the first six or so years after it begins, but then they tend to fall more in line with the typical trajectory of adult patients with MS. In patients who experience more progressive disease symptoms, those typically begin at the same age as in patients whose disease starts in adulthood.

How can professionals most effectively prepare their young patients for the long-term impact of MS?

This requires a long-standing relationship and years’ worth of visits to work through. It’s not the same process for every patient, but being there to support them and provide advice on the best way to move forward with their disabling disease is part of the job. We offer an array of services, including neuropsychological testing, to help with schooling needs, and I always recommend social work or psychology services as well, depending on those needs.

How can professionals most effectively address medication adherence?

You can provide medications in multiple ways, some of which greatly improve adherence. While I often start kiddos who have mild to moderate disease on pills they take by mouth, those who have difficulty with adherence often do much better with infusion therapy, where they do not have to rely on perfecting their skills in reliably taking pills over time.

To help them recognize poor adherence, we often make sure parents coordinate auto-refills of medications when they are due, whenever possible. This allows families and patients to get a sense of poor adherence issues occurring well before a follow-up visit in the clinic.

How important is considering mental health issues during this transition?

We regularly check in with our patients in the neurology clinic regarding their mental health issues, including a screen for suicidal thoughts that has to be conducted every 6 months. While I’m not a psychiatrist, I often recommend or get children in contact with appropriate mental health resources. Dealing with the diagnosis of a chronic disease can be detrimental to mental health, let alone the physiologic problems MS causes to the brain that can result in depression and anxiety.

Do you advise a multidisciplinary approach?

Our neuroinflammatory clinics have a few nurses who work with these patients, so the patients have a primary contact they know well in the clinic. We also offer consultations with a pharmacist for children having adherence issues or insurance coverage difficulties. Getting medications for MS covered by insurance is such a daunting task that requires multiple members of the team working together to make it happen for the families.

What additional advice or comments do you have for clinicians?

My best advice for anyone starting to take care of this population would be don’t try to do it alone. For my first couple of years working with these patients, I did not have nearly the degree of help I have now with getting medications covered, getting MRI through insurance protocols, and just having more than one person in my clinic who has a relationship with the families during the weeks I’m out of the office. It took a long time to build, but it’s completely worth it for myself and for the families.