Knowledge and attitudes toward ketogenic dietary therapy in adults with epilepsy

Ketogenic diet therapy (KDT) is the treatment of choice for glucose transporter type 1 deficiency syndrome and is well established in pediatric drug-resistant epilepsies; in adults with drug-resistant epilepsy (DRE), controlled evidence remains limited and KDT is rarely used. Guided by the COM-B (Capability, Opportunity, Motivation-Behavior) model, we examined knowledge, concerns, and daily-life determinants of openness to KDT among adults with epilepsy.

Consecutive adults with epilepsy at a tertiary epilepsy center in Germany (predominantly medically refractory cases) completed a questionnaire assessing prior KDT awareness/experience, willingness to consider KDT if antiseizure medications remained insufficient, KDT-related concerns, diet- and cooking-related lifestyle factors, perceived feasibility of changing cooking habits, and sociodemographic/clinical characteristics (N = 184).

38.0% had heard of KDT, and 41.3% would consider it if antiseizure medications were insufficient. Openness was largely unrelated to clinical variables but associated with lifestyle factors (regular cooking, independent meal preparation, current dieting, and perceived feasibility of changing cooking habits). Content analysis of open-ended responses indicated concerns centered on time demands, complexity, dietary inflexibility, and changing established eating patterns, whereas doubts about efficacy were rarely mentioned.

Adults with epilepsy, including many with self-rated hard-to-treat disease, show substantial gaps in KDT awareness, and attitudes are shaped mainly by perceived practical rather than medical barriers. Counseling should prioritize everyday feasibility (cooking/shopping routines, social eating) and involve dietitians and experienced peers to support informed decisions and uptake in tertiary-care epilepsy services.