Barriers and facilitators to starting and staying on ketogenic diet therapy for children with epilepsy: A scoping review

Abstract

Background

Ketogenic diet therapy (KDT) is a group of high-fat, low-carbohydrate, moderate protein diets that are an effective treatment option for children and young people with drug-resistant epilepsy. However, 45 % of patients referred to start KDT, who are medically eligible to do so, do not start diet. A further 25 % discontinue KDT before 3 months.

Aim

To explore barriers and facilitators for children and young people with epilepsy to start or continue on KDT, and their families. Based on the Participants, Concept and Context (PCC) framework, this review included children and young people with drug-resistant epilepsy (P) referred for KDT (C) or their families, who had expressed their views regarding barriers or facilitators for starting or continuing on dietary treatment (C).

Methods

This scoping review followed JBI methodology. Identified barriers/facilitators were matched to relevant sections of the ‘Capability, Opportunity, Motivation – Behaviour’ (COM-B) model and organised according to the phases of the patient journey: pre-diet, diet initiation and maintenance.

Results

60 studies were included. 15 barriers and 9 facilitators were identified for the pre-diet and initiation stages; 19 barriers and 14 facilitators were identified for staying on KDT once the diet had been fully established.

Conclusions

Barriers and facilitators for children and young people who are considering starting KDT, or who are currently following KDT, and their families, are multifactorial and extend beyond the level of the individual. Our findings will help identify areas to prioritise for interventions to support patients and their families.