iKETO-KNOW: A QUESTIONNAIRE DEVELOPMENT AND VALIDATION STUDY The Role of Knowledge Assessment and Enhancement in Adherence to Ketogenic Dietary Therapies

This study addresses the critical role of Ketogenic Dietary Therapies (KDTs) in managing drug-resistant epilepsy (DRE) and rare neurometabolic disorders like Glut1 Deficiency Syndrome (Glut1DS). Despite their proven efficacy, successful implementation of KDTs hinges on strict adherence to dietary protocols, which is intricately tied to patients' level of dietary knowledge (DK). Enhancing health literacy through targeted educational interventions is pivotal in improving adherence and treatment outcomes. However, accurately assessing treatment knowledge levels remains challenging due to the absence of standardized tools. The Delphi method was utilized to develop the questionnaire, involving a panel of experts in neurology and nutrition. Three iterative rounds characterized the tool's refinement process, culminating in a high percentage of agreement among experts. Subsequently, the finalized tool was administered to a target population consisting of caregivers, partners, and patients following KDT. Statistical analyses were then conducted to establish both demographic characteristics and psychometric properties within the sample. The primary objective of this study was to develop and validate a psychometric tool designed to systematically assess knowledge levels among individuals adhering to KDTs. Results indicated adequate test-retest reliability of the questionnaire items. Furthermore, a consistently high level of knowledge was observed across diverse patient profiles, independent of specific diagnoses or variations in KDT protocols. Notably, discrepancies were noted between self-reported dietary knowledge and objective assessment scores. Additionally, no significant correlations emerged between participant age, duration of KDT adherence, and levels of ketonemia. Future research aims to address the study's limitations in sample representativeness and intends to extend the tool's administration to a broader population.