Parental perspectives on dietary therapy for children with intractable epilepsy: factors influencing efficacy, tolerability and compliance

Purpose: To explore parental perceptions of the KD service delivery at a single centre and how these affected compliance, efficacy and tolerability of children with intractable epilepsy on the KD. Additionally, to identify strengths and weakness of the KD service and provide strategies to improve service delivery and optimise treatment compliance of children and families commencing the KD. Method: 42 of 90 families whose children had commenced the KD at our centre between1997-2015 completed the parental perspectives questionnaire. Parental reported side-effects attributable to the KD were explored along with perceived tolerability of and compliance with the KD and parental perceptions of seizure reduction and cognitive improvement. Parental views concerning initiation, maintenance, follow-up, and suggestions for improving delivery of the KD were also explored. Results: Most parents felt satisfied, confident and supported during their experience with the KD. They reported difficulties with preparation and increased time required to administer the KD (31%), disruption of family dynamics (24%), compliance/understanding of others in the child’s care network (19%), and food refusal (19%). Parents whose child stayed on the diet for longer were more likely to cite overall cognitive or developmental gains and the degree of parent-reported reduction in seizure burden was associated with parental perceptions of these gains. Additionally, greater parent-perceived reduction in seizures was associated with diet duration. Parents suggested further dietetic support, frequent KD follow-up clinics, and parent mentorship to improve delivery. Conclusions: Parents valued the efficacy of the diet, yet acknowledged the increased burden of care