Abstracts

RATIONALE: The ketogenic diet is a non-medication based treatment for epilepsy that is administered by the family. Concern exists that the work involved in maintaining a child on this diet may not be worth the on-going effort the family must undertake. This study examines family's experience with the diet including their level of satisfaction. METHODS: A structured interview was conducted with families of patients who had been on the ketogenic diet for at least 3 months (n=33). The "Keto Family Stressors Scale" was administered, as was the "Impact of Pediatric Epilepsy: Parent's Questionnaire" (IPES). Families reported the degree of seizure control using Engel's scale. RESULTS: 91% of the families interviewed were very satisfied (n=21) or satisfied (n=9) with the diet. Results of seizure control using Engel's scale were 24% Class I (seizure free), 30% Class II (only rare seizures), 42% Class III (worthwhile improvement) and only 3% Class IV (showing no worthwhile improvement). There did not appear to be a correlation between seizure control and parent satisfaction with the diet. Families mentioned decreased seizures, decreased AEDs and increased alertness as the most positive outcomes of the diet. Families were asked to rate the level of additional stress to the family associated with having a family member on the ketogenic diet. While 81% (n=27) reported additional stress, 70% of the families stated that the stress was minimal. Stressors mentioned most frequently were changes in family lifestyle (55%), constipation/reflux related to the diet (45%), feeling guilty about food restrictions (33%) and boredom/burnout with the diet (30%). CONCLUSIONS: Most of the families in our study were satisfied with having a child on the ketogenic diet. Even when total seizure control was not obtained, families saw the treatment as helpful for their child. Although stressful for most families, the beneficial results of being on the ketogenic diet out weighed the time and effort needed to administer the diet.