Jakość życia i związane z nią czynniki u głównych opiekunów dzieci z opornymi na leczenie padaczką stosującymi dietę ketogenną przez długi czas: badanie przekrojowe
Quality of Life and Associated Factors in Primary Caregivers of Children with Refractory Epilepsy on Long-Term Ketogenic Diet: A Cross-Sectional Study
W skrócie
Badacze przeanalizowali, jak dieta ketogenna wpływa na samopoczucie rodziców i opiekunów dzieci z ciężką padaczką. Okazało się, że najważniejsze dla komfortu opiekunów były: czy potrafili przestrzegać diety (co wpływało na ich otoczenie i relacje społeczne) oraz czy stać ich było na ponoszenie kosztów leczenia. Naukowcy zaproponowali, aby lekarze wspierali rodziny nie tylko lekami, ale również pomocą w radzeniu sobie ze stresem i trudnościami finansowymi związanymi z leczeniem.
Oryginalny abstract (angielski)
In ketogenic therapy for children with refractory epilepsy-a special patient group-the quality of life of primary caregivers is often overlooked. This study aimed to explore the current state of primary caregivers' quality of life and identify associated risk factors. A cross-sectional study was conducted from 21 January 2024 to 21 January 2025. A total of 117 primary caregivers of children with refractory epilepsy completed the World Health Organization Quality of Life (WHOQOL)-BREF (26 items) and Adherence questionnaire (6 items). Participants were divided into KD therapy groups (n = 51) and non-KD therapy groups (n = 66) according to the treatment. Factors associated with caregivers' QoL in the ketogenic treatment were analyzed using the multifactor hierarchical regression. There was no significant difference in QoL scores between the KD and non-KD caregiver groups ( > 0.05). KD adherence emerged as independently associated with caregivers' QoL, particularly in the environmental domain (Model 1: β = -0.309, = 0.022; Model 2: β = -0.306, = 0.025). A higher KD cost was significantly associated with a lower social domain score in both models (Model 1: β = -0.285, = 0.032; Model 2: β = -0.286, = 0.034). Model 1 for the environmental domain demonstrated modest explanatory power (Adjusted R = 0.246, = 0.002). These findings underscore the need for clinical support systems to assess and address modifiable stressors early in treatment, including family structure, challenges with ketogenic diet therapy adherence, and financial burden. Such comprehensive evaluation is essential for developing effective and personalized interventions.