Pediatric to Adult Transitions for Ketogenic Therapy

Pediatric to Adult Transitions for Ketogenic Therapy

Epilepsy News From:

Thursday, September 24, 2020

For this month’s Keto News, we asked Dr. Elizabeth Felton from University of Wisconsin at Madison to guest write about her recent paper. Dr. Felton trained with us at Johns Hopkins University before moving west and runs their center’s adult epilepsy diet center.

I will profile an article I co-authored in July 2020 in the Journal of Child Neurology which discusses pediatric to adult transitions for patients on ketogenic therapy. This issue is important because we want to make sure patients on ketogenic therapy are able to continue into adulthood (if desired) and have appropriate follow-up with providers and nutritionists familiar with ketogenic therapies.

What do we mean by “transition”?

“Transition” refers to patients moving from a pediatric neurology clinic to an adult neurology clinic. Typically, this takes this place around age 18 and can be a stressful time for patients with specialized medical needs and treatment regimens. 

The American Academy of Neurology (AAN) and American Epilepsy Society (AES) have guidelines and tools available to help make the transition process smoother. However, there are currently are no specific guidelines for transitioning patients on ketogenic therapy, despite the fact that they are increasingly being used in adolescents with epilepsy.

Keto-Specific Transition Survey

As a first step to addressing the lack of transition guidelines for ketogenic therapy, this article presents results from a survey of pediatric and adult epilepsy providers (physicians, nurse practitioners, and physician assistants) who offer ketogenic therapy to children and/or adults with epilepsy.

The survey was emailed to 191 providers at 161 separate institutions around the world and we received 74 valid survey responses – 14 from adult neurology providers and 60 from pediatric epilepsy providers. The survey included questions about the providers experience and opinions about dietary therapies and the transition process.

Barriers to Keto Transition

While 84% of survey respondents stated that ketogenic therapy was “very” or “extremely” accepted as a treatment for epilepsy in children, only 17% said this for epilepsy in adults! Pediatric providers identified several barriers to successful transition.

Most common were lack of adult providers with dietary knowledge, lack of adult nutritionists to work with patients on ketogenic therapies, and hesitation among parents and patients to switching to an adult provider.

Due to these barriers, 55% of pediatric providers continue to care for patients on ketogenic therapies into adulthood. Only 23% of pediatric providers reported having a documented transition plan. However, pediatric providers who do have a formal transition plan were significantly more satisfied with the transition process. 

What is needed to improve the transition process?

  1. More adult neurology providers familiar with managing ketogenic therapies.
  2. More nutritionists with training in ketogenic therapy for adults.
  3. Combining #1 and #2 – more established centers for offering ketogenic therapy to adults.
  4. Development of transition guidelines that incorporate specifics about ketogenic therapies.

Recommendations for patients and families preparing for transition

  • Discuss how long you anticipate being on ketogenic therapy with your epilepsy provider and nutritionist.
  • Ask about the availability of adult epilepsy providers and nutritionists familiar with ketogenic therapy. The Charlie Foundation maintains a database of ketogenic therapy clinics around the world, and the listings specify if they work with pediatrics, adults, or both.
  • If appropriate, parents/families can start helping the adolescent take more ownership of managing the ketogenic diet on their own.
Authored by: Elizabeth Felton MD on 9/2020
Reviewed by: Eric Kossoff MD on 9/2020

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