Purpose: Ketogenic diet (KD) is a well-established nonpharmacologic treatment for drug-resistant epilepsy. However, although KD has a long history of clinical use, there are still many difficulties with its real-world practice. This study retrospectively described the situation of KD practice in two children's hospitals in Southwest China.
Methods: We reviewed and analyzed clinical data collected at the baseline, and during follow ups at 1, 3, 6, 12, 18, and 24 months. The patient retention, the efficacy, side effects of KD, and the reasons for discontinuation were focused.
Results: There was increasing availability of KD for children with epilepsy in Southwest China and its effectiveness in controlling seizures was reconfirmed. Nonetheless, less than half of the patients adhered to KD for one year and about 1/5 of the patients for two years. Unsatisfactory seizure control was the most common reason for discontinuation, followed by patient/caregiver preference, acute infection, and loss to follow up. Adverse effects were mostly tolerable and not the main reason for discontinuation. Meanwhile, KD showed negative impacts on linear growth, and our cohort seemed to have more infections and deaths.
Conclusions: Despite increasing availability and good efficacy, long-term adherence to KD was difficult. Compliance issues appeared to be prominent. Enhancing food taste and patient support can help to improve the retention rate.
Keywords: Children with epilepsy; Clinical practice; Disadvantages; Discontinuation; Ketogenic diet; Southwest China.
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