Maintenance of response to ketogenic diet therapy for drug-resistant epilepsy post diet discontinuation: A multi-centre case note review.

There is limited research on the proportion of individuals with epilepsy who maintain response to ketogenic diet therapy (KDT) after discontinuing treatment. We aimed to determine the proportion of individuals who did / did not maintain response post KDT and explore factors that may influence the likelihood of maintaining response. Retrospective data were collected from 97 individuals from 9 KDT centres. Individuals had achieved ≥50 % seizure reduction on KDT for at least 12 months, with seizure frequency data available at 3 months+ post diet. Outcome 1 was: recurrence of seizures or increase in seizure frequency post diet; outcome 2: recurrence of seizures, increase in seizure frequency or an additional anti-seizure treatment started post diet. 61/97 (62.9 %) individuals maintained response at latest follow-up (mean 2.5[2.0] years since stopping KDT). Approximately one third maintained response without further anti-seizure treatments. One quarter of individuals had an increase in frequency or recurrence of seizures within 6 months (95 %CI 4, 12) for outcome 1 and within 3 months (3, 6) for outcome 2. Individuals who did not achieve seizure freedom on diet were significantly more likely to have an increase in seizures or to require additional anti-seizure treatments post diet compared to those who were seizure-free on diet (hazard ratio 4.02, 95 %CI (1.46, 11.16) p < 0.01). Our findings should help guide clinical teams with the information they provide patients and their families regarding likelihood of long-term seizure response to KDT. Realistic costings for KDT services may need to be considered.

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Déclaration de conflit d'intérêts

Declaration of competing interest NES was previously supported for a research post by Vitaflo (International). She has received grants from Nutricia Advanced Medical Nutrition, Vitaflo (International) and Matthew's Friends Charity, and honoraria from Nutricia Advanced Medical Nutrition, Vitaflo (International) Ltd and Dr Schaer. EGN has received consultancy payments and honoraria from Vitaflo (International), Kanso and Cerecin. CTS is a director of FabeSmith Limited (trading as KetoSuite™) and Smith Family Limited (trading as Ketogenic Diet Therapy New Zealand). She has received grants from Callaghan Innovation and The Brydie Lauder Trust and honoraria from Nutricia Limited (NZ) and Cortex Health. EC and PT have received consultancy payments, honroraria and sponsorship from Nutricia Ltd Advanced Medical Nutrition. The remaining authors report no conflicts of interest.