Transition Planning from Pediatric to Adult Care: A Survey of Ketogenic Diet Centers
Abstract number :
3.349
Submission category :
10. Dietary Therapies (Ketogenic, Atkins, etc.)
Year :
2022
Submission ID :
2204939
Source :
www.aesnet.org
Presentation date :
12/5/2022 12:00:00 PM
Published date :
Nov 22, 2022, 05:27 AM
Authors :
Deana Bonno, MD – University of Rochester Medical Center; Leeann Habben, RD, CDN, CNSC – Ketogenic Dietitian, University of Rochester Medical Center; Inna Hughes, MD, PhD – Associate Professor of Neurology and Pediatrics, University of Rochester Medical Center
Rationale: Ketogenic diet therapies have been a recognized treatment for drug-resistant pediatric epilepsy since the 1920s.1 More recently, these therapies have been adapted for easier use by a broader population, including adolescents and adults. At the same time, patients and their families are independently seeking out dietary therapy when medications fail to control seizures adequately. In pediatric neurology, the discussion regarding eventual need to transition to an adult practice begins around 12 to 14 years of age.2 When considering a pediatric patient with epilepsy utilizing dietary therapy, this transition can become more complex for reasons including lack of access to adult epilepsy centers offering dietary therapy, absence of trained dietitian support, lack of insurance coverage for dietary therapy supplies and variable acceptance of dietary therapy as a valid treatment modality in adults with epilepsy.3
Methods: We surveyed physicians and dietitians who directly manage patients utilizing ketogenic diet therapies via the REDCap platform. The survey was distributed in a variety of ways: through a ketogenic dietitian email listserv, through social media private neurology groups, and via AAN Synapse Epilepsy Section.
Results: A total of 17 responses were received; 10 from dietitians and 7 from MD/DO respondents. Six respondents indicated they did not have a transition plan for their pediatric patients while an additional three respondents indicated they transitioned their patients to a geographically nearby, but separate, institution with no formal hand off in place. Only 4 respondents indicated there was a formal hand off of patients from pediatric to adult care, and an additional 1 left this response blank. In this latter case, the respondent indicated a transition plan was in place and the same dietitian was maintained, so a formal hand off process is likely not necessary. Including that respondent, 5 of the respondents indicated their patients maintain the same dietitian through their transition to an associated adult program.
Conclusions: Ideally, transition for pediatric patients with refractory epilepsy using ketogenic diets should include an adult program at the same or affiliated institution with a formal hand off if different providers will be involved. Maintaining the same dietitian may make the transition process easier on families and the adult practitioners accepting these patients. The next best option would be identification of a nearby institution with a formal hand off between physicians/APPs and dietitians. The documentation included in transition should include a thorough diet and epilepsy history. Given the increased use of dietary therapies for epilepsy among all ages, there is increased need for adult practitioners who can provide this ongoing care to patients with epilepsy.
References:
1. Freeman JM, Kossoff EH. Ketosis and the ketogenic diet, 2010: advances in treating epilepsy and other disorders. Adv Pediatr. 2010;57(1):315-329.
2. Got Transition® - Six Core Elements of Health Care Transition™
3. Seaborg K, Wang X, Olson C, Felton EA. Pediatric to adult transitions of ketogenic dietary therapy for epilepsy. J Child Neurol. 2020;35(13):896-900.
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Funding: None
Dietary Therapies (Ketogenic, Atkins, etc.)