Quality of Life and Associated Factors in Primary Caregivers of Children with Refractory Epilepsy on Long-Term Ketogenic Diet: A Cross-Sectional Study

Background/Objectives: 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. Methods: 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. Results: There was no significant difference in QoL scores between the KD and non-KD caregiver groups (p > 0.05). KD adherence emerged as independently associated with caregivers’ QoL, particularly in the environmental domain (Model 1: β = −0.309, p = 0.022; Model 2: β = −0.306, p = 0.025). A higher KD cost was significantly associated with a lower social domain score in both models (Model 1: β = −0.285, p = 0.032; Model 2: β = −0.286, p = 0.034). Model 1 for the environmental domain demonstrated modest explanatory power (Adjusted R2 = 0.246, p = 0.002). Conclusions: 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.

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Journal
Healthcare
Published
2026-06-18
DOI
https://doi.org/10.3390/healthcare14121761
Primary Topic
Diet and metabolism studies
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article
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article

Quality of Life and Associated Factors in Primary Caregivers of Children with Refractory Epilepsy on Long-Term Ketogenic Diet: A Cross-Sectional Study

Yong Zhao, Liu Y, Yi-Xiang Wang, Qin Deng et al.
Healthcare
Diet and metabolism studies
article

Quality of Life and Associated Factors in Primary Caregivers of Children with Refractory Epilepsy on Long-Term Ketogenic Diet: A Cross-Sectional Study

Yong Zhao, Liu Y, Yi-Xiang Wang, Qin Deng, Xia Li, Xiaoyan Yi
article en

Abstract

Background/Objectives: 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. Methods: 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. Results: There was no significant difference in QoL scores between the KD and non-KD caregiver groups (p > 0.05). KD adherence emerged as independently associated with caregivers’ QoL, particularly in the environmental domain (Model 1: β = −0.309, p = 0.022; Model 2: β = −0.306, p = 0.025). A higher KD cost was significantly associated with a lower social domain score in both models (Model 1: β = −0.285, p = 0.032; Model 2: β = −0.286, p = 0.034). Model 1 for the environmental domain demonstrated modest explanatory power (Adjusted R2 = 0.246, p = 0.002). Conclusions: 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.

HealthcareVol. 14(12)
Sichuan Fine Arts Institute (CN), Chongqing Public Health Medical Center (CN), Children's Hospital of Chongqing Medical University (CN), Chongqing Medical University (CN)
Partnerships for the goals
Openalex Percentile: Top 6%
Diet and metabolism studies
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