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Management of Drug-resistant Epilepsy in Infants and Children: a Real-life Study of the Use of the Ketogenic Diet in France and the KetoCal® Range in Its Maintenance

Recruiting
Conditions
Ketogenic Dieting
Drug Resistant Epilepsy
Interventions
Other: Ketocal
Registration Number
NCT06075485
Lead Sponsor
Nutricia Nutrition Clinique
Brief Summary

This is a multicenter, prospective, observational, longitudinal study designed to describe the therapeutic value of the KetoCal® range in the maintenance of a ketogenic diet during the management of infants (from 5 months) and children up to 17 years of age (i.e. 18 years minus 1 day) with drug-resistant epilepsy.

This study is being conducted according to standard medical practice. No change in diagnostic or therapeutic management habits is imposed by this study. Quality of life questionnaires are the only additional procedures for this research.

Detailed Description

NUTRICIA has developed the KetoCal® range (4:1 and 3:1), a food for special medical purposes (DADFMS), to help healthcare professionals and patients establish and maintain a CR. KetoCal® 4:1 features a 4:1 ratio of fat to (carbohydrate + protein), while containing vitamins, minerals, trace elements and fiber. Similarly, KetoCal® 3:1 has a 3:1 ratio of lipids / (carbohydrates + proteins), while containing vitamins, minerals, trace elements and fiber. The KetoCal® range can be consumed orally, as a drink after dilution in hot water, incorporated as an ingredient in a recipe or administered by enteral feeding tube.

The KEOPS study is designed to gather real-life data on the therapeutic value of using the KetoCal® range in the management of drug-resistant epilepsy in infants (from 5 months) and children up to 18 years of age. Patients will be managed according to standard care practices. Initiation of ketogenic dieting will be at the investigator's discretion during the child's hospitalization.

Recruitment & Eligibility

Status
RECRUITING
Sex
All
Target Recruitment
133
Inclusion Criteria
  • Infants from 5 months and children up to 17 years of age (maximum 18 years minus 1 day).
  • With drug-resistant epilepsy according to ILAE (International League Against Epilepsy) criteria: persistence of epileptic seizures after failure of two appropriate antiepileptic drugs tried consecutively or in well-tolerated combination.
  • Indication for CR by a physician.
  • Parents (or legal guardians) able to set up and follow the diet, assessed during a joint doctor-dietician consultation.
  • Written authorization from one (or both) parents or the child's legal representative to collect personal information about their child.
  • Affiliation of the infant/child with the social security system.
Exclusion Criteria
  • Contraindication to ketogenic diet at initial assessment.
  • Children already on a ketogenic diet.
  • Parenteral nutrition.
  • Concurrent prescription of other foodstuffs intended for special medical purposes (DADFMS) such as KetoVie or Keyo.
  • Protected legal representative (under legal protection, or deprived of liberty by judicial or administrative decision).
  • Legal representative not covered by a social security scheme.
  • Legal representative unable to understand study protocol.

Ancillary study eligibility criteria :

  • Patients included in the study.
  • Continued on the ketogenic diet for at least 2 months.
  • Having consented to participate in the ancillary study.

Study & Design

Study Type
OBSERVATIONAL
Study Design
Not specified
Arm && Interventions
GroupInterventionDescription
PatientKetocalInfants (from 5 months) and children up to 17 years of age follow up for drug resistant epilepsy
Primary Outcome Measures
NameTimeMethod
Description of compliance6 months

Retention rate which is defined as the proportion of patients who have continued KD for up to 6 months.

Secondary Outcome Measures
NameTimeMethod
Duration of complianceFrom Month 1 to Month 6

Describe the duration of KD compliance.

Efficacy of KDFrom Month 1 to Month 6

Describe the efficacy of KD. Efficacy is defined as responders to KD with seizure frequency reduced by more than 50%, or no seizure frequency in the case of total response to CR in the last week.

Influence of KDFrom inclusion to Month 6

Total number of antiepileptic drugs used for each child including their current treatment until the end of the study.

Ketosis achievementFrom inclusion to Month 6

Evaluate the time it takes to achieve ketosis. Ketosis will be assessed by ketonuria or ketonemia, depending on the habits of each center.

QoL evolutionFrom inclusion to Month 6

Describe changes in patients' quality of life following initiation of KD at inclusion, and M6; using PedsQL ™ questionnaires

KD tolerance.From inclusion to Month 6

Describe KD tolerance as a number of AE reported

Trial Locations

Locations (1)

CHRU Lille

🇫🇷

Lille, France

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