#CMSC2018 — Advances Made in Care of Children with MS, but Challenges Remain, Expert Says

#CMSC2018 — Advances Made in Care of Children with MS, but Challenges Remain, Expert Says

While the treatment and care of children and teenagers with multiple sclerosis (MS) has seen many developments in recent years, there are still many challenges to overcome, according to a presentation given by Brenda Banwell, MD.

Banwell, who is the chief of child neurology at the Children’s Hospital of Philadelphia, reviewed the current state and challenges in pediatric MS care at the 2018 Annual Meeting of the Consortium of Multiple Sclerosis Centers recently held in Nashville, Tennessee. The presentation was titled “Comprehensive Care of Children Living with MS.”

Pediatric MS often presents as a relapsing-remitting disease with similar features as those reported in adult-onset disease. The disease can have a progressively damaging effect in children.

According to Banwell, an improved understanding on the long-term impact of MS in children’s lives is crucial to define treatment and care.

Children and teenagers with MS often have a good relapse-recovery pattern, with minimal physical disability during the first 10 years. However, MS can have a significant impact on their cognitive development because it affects neuronal networks in maturation and leads to tissue loss.

Acute treatment for these patients has been based on the use of corticosteroids, intravenous immunoglobulin, and plasma exchange.

Until recently, there were no approved therapies to treat pediatric MS. Off-label use of available therapies in this population has been based on clinical practice evidence, evaluating the risks versus the benefits when escalating doses and medicines until a response is achieved.

The approval of Gilenya (fingolimod), marketed by Novartis, by the U.S. Food and Drug Administration in May as a treatment for children and teenagers with MS was a game-changer.

Results of the Phase 3 PARADIGMS clinical trial (NCT01892722), of which Banwell is co-principal investigator, revealed that treatment with Gilenya led to an almost 82% reduction in the frequency of MS flares in pediatric MS patients compared with Avonex (interferon beta-1a). The trial also showed that Gilenya could prevent the development of new brain lesions by 53.4%, and reduce by 77.2% the risk of three-month confirmed disability progression.

In her presentation, Banwell also emphasized that MS not only has a negative impact on children’s health-related quality of life, but it can also change their social life and family balance.

“MS happens in a family,” Banwell said, noting that parents and relatives of children with MS also experience worse personal health-related quality of life, and anxiety and depression.

According to Banwell, there is a need for proper care and management tailored to this patient population. “[The] goal is to optimize care so that all patients can participate in the same activities as peers,” she said.

Treatment approaches should be personalized so children can take part in common activities, such as recreational or competitive sports, and medication “holidays” should be considered when the patient is on a vacation or break.

It is also important to keep in mind that treatment should be optimized to ensure that children and teenagers with MS can attend school and make the most of it, Banwell said, with the goal of finding the best treatment to reduce relapses in order to limit absences from school.  Strategies to manage fatigue, anxiety, and depression are also very important to maintain the child’s motivation.

To achieve all these goals, the care environment should be tailored to this population. Adult MS clinics and providers may not be a suitable setting for pediatric MS patients, since they have specific needs not shared with adult patients.

A comprehensive care team for pediatric MS should include an experienced pediatric MS provider and MS nurse or nurse practitioners, as well as psychiatry, occupational, and physical therapists, social workers, and neuropsychology experts.

Access to mental health services is limited and often denied by insurance companies, and team members are essential to assist patients and their families in gaining access to therapies.

Despite the advances made in care for children and teenagers with MS, there is still a lot to be done in the future to further improve their quality of life, Banwell said.

Research studies should evaluate the contribution of obesity (as an inflammatory state) for pediatric MS, and how exercise and weight management could help lower fatigue and other symptoms. According to Banwell, there is also little information on the impact that exposure to nicotine, cannabis, alcohol, or other substances can have on cognitive impairment in this patient population.

With Gilenya’s approval for pediatric MS, care teams also have a new challenge to monitor the long-term effects of the therapy, as well as any other new treatments, and their outcomes in this patient population.

With the goal of improving worldwide healthcare, education, and research in pediatric MS and other demyelinating diseases, a global network of experts was established — called the International Pediatric MS Study Group — made up of adult and pediatric neurologists, basic scientists, clinicians, representatives of MS societies, and other relevant professional organizations.

The group currently has 150 representatives from 40 countries, and its mission is to “improve care worldwide for children with MS and demyelinating disorders,” and to “conduct global research in pediatric MS,” Banwell said.

3 comments

  1. Joan Quilter says:

    Thirty years ago, the medical community did not recognize MS in children. My daughter had MS, I believe, all her life. She is, now, 41 and in hospice. Diagnosed at the age of 20, she went on Avonex for 7 years, tried Copaxone and Tysabri, too. Went for stem cells and CCSVI procedures. Tried everything, traditional and alternative, etc.

  2. merlin kim samonte says:

    recently 5 days ago my child a girl 7 years old only, she was diagnosed with demyelination rule out Multiple Sclerosis. Symtoms were loss vision on one eye then only a day both eyes lost vision. her left leg was weakened and lost her balance. she was treated with intravenous methylprednisolone for three days and oral version for a month.. hoping for her recovery. for now she has blurry vision as what she described, she struggle to stand up but wobbles…

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