The Ketogenic Diet in Children with Epilepsy: A Focus on Parental Stress and Family Compliance

Operto, Francesca Felicia; Labate, Angelo; Aiello, Salvatore; Perillo, Cristina; Simone, Valeria De; Rinaldi, Rosetta; Coppola, Giangennaro; Pastorino, Grazia Maria Giovanna

doi:10.3390/nu15041058

Cited by 16 publications

(14 citation statements)

References 34 publications

(47 reference statements)

Supporting

Mentioning

Contrasting

Order By: Relevance

“…Evidence also demonstrated some efficacy in improving cognitive abilities ( Rho and Boison, 2022 ; Zhu et al, 2022 ). However, such dietary therapy is difficult to adhere to, needs continuous monitoring, is unsuitable for all patients, and has several side effects ( Rho and Boison, 2022 ; Zhu et al, 2022 ; Operto et al, 2023 ). A better understanding of the molecular mechanisms through which KD and novel ASM can alleviate seizures and cognitive deficits is fundamental for developing new drugs with an overall efficacy while avoiding side effects as much as possible.…”

Section: Discussionmentioning

confidence: 99%

Advances toward precision therapeutics for developmental and epileptic encephalopathies

2023

View full text Add to dashboard Cite

Developmental and epileptic encephalopathies are childhood syndromes of severe epilepsy associated with cognitive and behavioral disorders. Of note, epileptic seizures represent only a part, although substantial, of the clinical spectrum. Whether the epileptiform activity per se accounts for developmental and intellectual disabilities is still unclear. In a few cases, seizures can be alleviated by antiseizure medication (ASM). However, the major comorbid features associated remain unsolved, including psychiatric disorders such as autism-like and attention deficit hyperactivity disorder-like behavior. Not surprisingly, the number of genes known to be involved is continuously growing, and genetically engineered rodent models are valuable tools for investigating the impact of gene mutations on local and distributed brain circuits. Despite the inconsistencies and problems arising in the generation and validation of the different preclinical models, those are unique and precious tools to identify new molecular targets, and essential to provide prospects for effective therapeutics.

show abstract

Section: Discussionmentioning

confidence: 99%

Advances toward precision therapeutics for developmental and epileptic encephalopathies

2023

View full text Add to dashboard Cite

show abstract

“…These feeds have been developed for children following a KD to provide variety and convenience, support adherence, and to help ensure nutritional needs are met. However, before now, there were no nutritionally complete feeds available which were suitable for older children, adolescents, and adults, despite the increasing use of KDs to manage drug‐resistant epilepsy in these groups 14,15 . There is also a growing interest in MCTs, particularly octanoic (C8) and decanoic (C10) acids into medical feeds for drug‐resistance epilepsy due to an increasing evidence of their antiseizure effects 16 .…”

Section: Introductionmentioning

confidence: 99%

“…However, before now, there were no nutritionally complete feeds available which were suitable for older children, adolescents, and adults, despite the increasing use of KDs to manage drug‐resistant epilepsy in these groups. 14 , 15 There is also a growing interest in MCTs, particularly octanoic (C8) and decanoic (C10) acids into medical feeds for drug‐resistance epilepsy due to an increasing evidence of their antiseizure effects. 16 Consequently, a ready‐to‐use, 2.5:1 ratio, nutritionally complete liquid feed including MCTs (25.6% of total fat) has been developed, suitable for children from 8+ years, adolescents and adults as a sole source of nutrition or as a supplementary feed, and can be used as part of any of the variant forms of the KD.…”

Section: Introductionmentioning

confidence: 99%

Tolerance, adherence, and acceptability of a ketogenic 2.5:1 ratio, nutritionally complete, medium chain triglyceride‐containing liquid feed in children and adults with drug‐resistant epilepsy following a ketogenic diet

Griffen,

Schoeler,

Browne

et al. 2024

Epilepsia Open

View full text Add to dashboard Cite

ObjectiveTo investigate incorporating a ready‐to‐use 2.5:1 ratio liquid feed into a ketogenic diet (KD) in children and adults with drug‐resistant epilepsy.MethodsFollowing a three‐day baseline, patients (n = 19; age: 19 years [SD 13], range: 8–46 years) followed a KD for 28 days (control period), then incorporated ≥200 mL/day of a ready‐to‐use liquid feed, made with a ratio of 2.5 g of fat to 1 g of protein plus carbohydrate and including medium chain triglycerides ([MCTs]; 25.6% of total fat/100 mL) for 28 days as part of their KD (intervention period). Outcome measures (control vs intervention period) included gastrointestinal (GI) tolerance, adherence to KD and intervention feed, dietary intake, blood ß‐hydroxybutyrate (BHB) concentration, seizure outcomes, health‐related quality of life (HRQoL), acceptability and safety.ResultsCompared to the control period, during the intervention period, the percentage of patients reporting no GI symptoms increased (+5% [SD 5], p = 0.02); adherence to the KD prescription was similar (p = 0.92) but higher in patients (n = 5) with poor adherence (<50%) to KD during the control period (+33% [SD 26], p = 0.049); total MCT intake increased (+12.1 g/day [SD 14.0], p = 0.002), driven by increases in octanoic (C8; +8.3 g/day [SD 6.4], p < 0.001) and decanoic acid (C10; +5.4 g/day [SD 5.4], p < 0.001); KD ratio decreased (p = 0.047), driven by a nonsignificant increase in protein intake (+11 g/day [SD 44], p = 0.29); seizure outcomes were similar (p ≥ 0.63) but improved in patients (n = 6) with the worst seizure outcomes during the control period (p = 0.04); and HRQoL outcomes were similar. The intervention feed was well adhered to (96% [SD 8]) and accepted (≥88% of patients confirmed).SignificanceThese findings provide an evidence‐base to support the effective management of children and adults with drug‐resistant epilepsy following a KD with the use of a ready‐to‐use, nutritionally complete, 2.5:1 ratio feed including MCTs.Plain language summaryThis study examined the use of a ready‐to‐use, nutritionally complete, 2.5:1 ratio (2.5 g of fat to 1 g of protein plus carbohydrate) liquid feed, including medium chain triglycerides (MCTs), into a ketogenic diet (KD) in children and adults with drug‐resistant epilepsy. The results show that the 2.5:1 ratio feed was well tolerated, adhered to, and accepted in these patients. Increases in MCT intake (particularly C8 and C10) and improvements in seizure outcomes (reduced seizure burden and intensity) and KD adherence also occurred with the 2.5:1 ratio feed in patients with the worst seizures and adherence, respectively.

show abstract

“…Long-term adherence to treatment with KDTs is often difficult for the patient and caregivers [5,[15][16][17][18][19][20][21]. The results of a meta-analysis including 11 studies with KDTs in adults revealed combined compliance rates of 45%, 38%, and 56% for all types of KDTs, CKD, and an MAD, respectively [22].…”

Section: Introductionmentioning

confidence: 99%

Validation of an Italian Questionnaire of Adherence to the Ketogenic Dietary Therapies: iKetoCheck

Lopes Neri,

Guglielmetti,

De Giorgis

et al. 2023

Foods

View full text Add to dashboard Cite

Ketogenic dietary therapies (KDTs) are an effective and safe non-pharmacological treatment for drug-resistant epilepsy, but adherence can be challenging for both patients and caregivers. In Europe, there are no adequate tools to measure it other than monitoring ketosis. This study aimed to adapt and validate the Brazilian adherence questionnaire, Keto-check, into the Italian version: iKetoCheck. Using the Delphi technique, 12 judges validated the contents through agreement rates and the Content Validity Index (CVI). The iKetocheck was self-completed electronically by 61 drug-resistant epilepsy or GLUT1 deficiency patients within an interval of 15 days to measure its reproducibility. The test–retest reliability was evaluated using Pearson’s correlation and relative significance test. Exploratory and confirmatory factorial analyses were made using Factor software version 12.03.02. The final tool, iKetoCheck, consists of 10 questions with 5-point Likert scale answers. It evaluates various aspects such as informing caregivers about the diet, organization of meals, measurement of ketosis, weighing food consumed, diet negligence, use of carbohydrate-free medications, attending follow-up visits, reading food labels, consulting an expert for dietary concerns, and cooking at home. The factorial analysis resulted in three factors: “attention,” “organization,” and “precision,” with satisfactory results for indices in exploratory and confirmatory analyses. Although higher mean values of ketonemia measurement were observed in patients with a higher adherence score, these values were not statistically significant (p = 0.284). In conclusion, despite the small sample size, iKetoCheck is a valid tool for evaluating KDTs’ adherence in Italian drug-resistant epilepsy or GLUT1 deficiency patients. It can provide valuable information to improve patient management and optimize the effectiveness of KDTs.

show abstract

The Ketogenic Diet in Children with Epilepsy: A Focus on Parental Stress and Family Compliance

Cited by 16 publications

References 34 publications

Advances toward precision therapeutics for developmental and epileptic encephalopathies

Advances toward precision therapeutics for developmental and epileptic encephalopathies

Tolerance, adherence, and acceptability of a ketogenic 2.5:1 ratio, nutritionally complete, medium chain triglyceride‐containing liquid feed in children and adults with drug‐resistant epilepsy following a ketogenic diet

Validation of an Italian Questionnaire of Adherence to the Ketogenic Dietary Therapies: iKetoCheck

Contact Info

Product

Resources

About