Abstracts

Rationale: A questionnaire survey was conducted to understand patients hopes, misconceptions, and concerns regarding ketogenic diet therapies (KDTs). KDTs like classical ketogenic diet and the modified Atkins diet are high-fat, low-carbohydrate, adequate protein diets. The safety and efficacy of KDTs for drug-resistant epilepsy (DRE) has been demonstrated primarily in children, studies in adult patients are still rare. Common adverse effects include gastrointestinal symptoms or weight loss, furthermore KDTs in many cases are more expensive than usual diets and the strict dietary requirements may place a sizeable burden on patients and families. A better understanding of patients’ concerns may improve the acceptability of the therapy by providing better information for future patients and providers.

Methods: Patients with epilepsy were recruited from the inpatient and outpatient clinic of the Epilepsy Centre Kleinwachau, Radeberg, Germany. We administered a questionnaire that noted prior knowledge and experience regarding KDTs, openness and concerns regarding KDT, diet-related lifestyle factors, and basic sociodemographic and clinical characteristics. 184 questionnaires are included in the analysis. About 71% of the sample were between 20 to 59 years of age, 54.8% were women. Age at onset was below 20 years in 69.8% of patients.

Results: A minority of patients (70 patients, 38.0%) reported having previously heard of this diet. Patients more often were informed about this treatment option if they had a self-rated hard-to-treat epilepsy (46.5 % vs. 29.0 %; (χ²(1) =4.837, p = .028), or a higher seizure frequency (U = 4149.500 p = .028). About 41.3% (n=76) of the patients stated they would try this diet if medications would not help sufficiently. There were few associations between openness to KDTs and clinical characteristics. Patients with earlier disease onset are less open to this therapy. Patients open to KDTs more often can imaging changing their diet and cooking habits (U=6547.500, p< .001), prepare their own meals (U = 4545.500, p = .041), and cook regularly (U = 4777.000, p = .006). Patients concerns included “Time requirement too high,” “Too complex and difficult,” “Hard to break eating habit,” “Too much stamina required,” “Nutrition insufficient.