What are The Barriers to Initiating or Sustaining The Ketogenic Diet in Pediatric Patients; Single Centre Experience

Öz

Objective: The ketogenic diet (KD) is an effective treatment for drug-resistant epilepsy in children. Despite its proven efficacy, a considerable number of eligible patients do not initiate or discontinue therapy prematurely. This study aimed to investigate the barriers to KD initiation and continuation following structured education provided by a specialized ketogenic care team. Materials and Methods: This retrospective study included pediatric patients referred to the Ketogenic Diet Clinic at Marmara University between 2014 and 2024 who either did not initiate the KD or discontinued it within the first three months. Out of 250 patients educated about the KD, 140 met the inclusion criteria and were contacted by phone. Seventy-two patients agreed to participate. Data were collected using a structured questionnaire and analyzed using descriptive statistics, chi-square and Mann-Whitney U tests, and logistic regression modeling to identify potential predictive factors. Results: This retrospective study included pediatric patients referred to the Ketogenic Diet Clinic at Marmara University between 2014 and 2024 who either did not initiate the KD or discontinued it within the first three months. Out of 250 patients educated about the KD, 140 met the inclusion criteria and were contacted by phone. Seventy-two patients agreed to participate. Data were collected using a struc tured questionnaire and analyzed using descriptive statistics, chi-square and Mann-Whitney U tests, and logistic regression modeling to identify potential predictive factors. Conclusion: Barriers to KD implementation were largely related to caregiver concerns, perceived dietary complexity, and doubts about effectiveness. These findings highlight the need for enhanced education, individualized support, and structured follow-up strategies to improve adherence and outcomes in clinical practice.

Anahtar Kelimeler

• Ketogenic diet
• epilepsy
• adherence
• barriers
• dietary therapy

Kaynakça

1. Dyńka D, Kowalcze K, Paziewska A. The Role of Ketogenic Diet in the Treatment of Neurological Diseases. Nutrients. 2022 Nov 24;14(23):5003. doi: 10.3390/ nu14235003. google scholar
2. Hameed H, Lopes Neri LC, Schoeler N. Barriers and facilitators to starting and staying on ketogenic diet therapy for children with epilepsy: A scoping review. Clin Nutr ESPEN. 2025 Apr;66:465-473. doi: 10.1016/j.clnesp.2025.02.020 google scholar
3. Karandienė J, Endzinienė M, Liaušienė K, Jurkevičienė G. The Assessment of the Efficacy, Safety, and Challenges of Ketogenic Diet Therapy in Children with Epilepsy: The First Experience of a Single Center. Medicina (Kaunas). 2024 May 31;60(6):919. doi: 10.3390/medicina60060919. google scholar
4. Borowicz-Reutt K, Krawczyk M, Czernia J. Ketogenic Diet in the Treatment of Epilepsy. Nutrients. 2024 Apr 24;16(9):1258. doi: 10.3390/nu16091258. google scholar
5. Kossoff EH, Zupec-Kania BA, Amark PE, Ballaban-Gil KR, Christina Bergqvist AG, Blackford R, Buchhalter JR, Caraballo RH, Helen Cross J, Dahlin MG, Donner EJ, Klepper J, Jehle RS, Kim HD, Christiana Liu YM, Nation J, Nordli DR Jr, Pfeifer HH, Rho JM, Stafstrom CE, Thiele EA, Turner Z, Wirrell EC, Wheless JW, Veggiotti P, Vining EP; Charlie Foundation, Practice Committee of the Child Neurology Society; Practice Committee of the Child Neurology Society; International Ketogenic Diet Study Group. Optimal clinical management of children receiving a ketogenic diet: recommendations of the International Ketogenic Diet Study Group. Epilepsia. 2009 Feb;50(2):304-17. doi: 10.1111/j.1528-1167.2008.01765.x. google scholar
6. Ye F, Li XJ, Jiang WL, Sun HB, Liu J. Efficacy of and patient compliance with a ketogenic diet in adults with intractable epilepsy: A meta-analysis. J Clin Neurol. 2015 Jan;11(1):26-31. doi: 10.3988/jcn.2015.11.1.26. google scholar
7. Ułamek-Kozioł M, Czuczwar SJ, Januszewski S, Pluta R. Ketogenic Diet and Epilepsy. Nutrients. 2019 Oct 18;11(10):2510. doi: 10.3390/nu11102510. google scholar
8. Lopes Neri LC, Guglielmetti M, Fiorini S, Pasca L, Zanaboni MP, de Giorgis V, Tagliabue A, Ferraris C. Adherence to ketogenic dietary therapies in epilepsy: A systematic review of literature. Nutr Res. 2024 Jun;126:67-87. doi: 10.1016/ j.nutres.2024.03.009. google scholar

9. Neal EG, Chaffe H, Schwartz RH. The ketogenic diet for the treatment of childhood epilepsy: A randomized controlled trial. Lancet Neurol. 2008;7(6):500–506. doi:10.1016/S1474-4422(08)70092-9. google scholar
10. Poelzer K, Mannion C, Ortiz MM Bang R, Woods P. A Systematic Review of the Quality of Life for Families Supporting a Child Consuming the Ketogenic Diet for Seizure Reduction. Curr Dev Nutr. 2018 Oct 22;3(5):nzz079. doi: 10.1093/cdn/ nzy079. google scholar
11. Thompson L, Fecske E, Salim M, Hall A. Use of the ketogenic diet in the neonatal intensive care unit. Epilepsia. 2017 Feb;58(2):e36-e39. doi: 10.1111/epi.13650. google scholar
12. Greenfield G, Shmueli L, Harvey A, Quezada-Yamamoto H, Davidovitch N, Pliskin JS, Rawaf S, Majeed A, Hayhoe B. Patient-initiated second medical consultations-patient characteristics and motivating factors, impact on care and satisfaction: a systematic review. BMJ Open. 2021 Sep 24;11(9):e044033. doi: 10.1136/bmjopen-2020-044033. google scholar
13. Werner RM, Polsky D. Comparing the supply of pediatric subspecialists and child neurologists. J Pediatr. 2005 Jan;146(1):20-5. doi: 10.1016/ j.jpeds.2004.08.061. google scholar
14. Zhu H, Bi D, Zhang Y, Kong C, Du J, Wu X, Wei Q, Qin H. Ketogenic diet for human diseases: the underlying mechanisms and potential for clinical implementation. Signal Transduct Target Ther. 2022 Jan 17;7(1):11. doi: 10.1038/ s41392-021-00831-w. google scholar
15. Newmaster K, Zhu Z, Bolt E, Chang RJ, Day C, Mhanna A, Paudel S, Farooq O, Swaminathan A, Acharya P, Cheungpasitporn W, Gupta S, Samanta D, Mahfooz N, Mainali G, Carney PR, Naik S. A review of the multisystemic complications of a ketogenic diet in children and infants with epilepsy. Children (Basel, Switzerland). 2022 Sep 10;9(9):1372. doi: 10.3390/children9091372. google scholar
16. Operto FF, Labate A, Aiello S, Perillo C, de Simone V, Rinaldi R, Coppola G, Pastorino GMG. The Ketogenic Diet in Children with Epilepsy: A Focus on Parental Stress and Family Compliance. Nutrients. 2023 Feb 20;15(4):1058. doi: 10.3390/ nu15041058. google scholar
17. Orr E, Whitney R, Nandeesha N, Kossoff EH, Ramachandran Nair. Ketogenic diet: parental experiences and expectations. J Child Neurol. 2024 Jan;39(1-2):45-54. doi: 10.1177/08830738241227066. google scholar
18. Basu, S, Hemamalini, AJ, Manokaran, RK. From Hesitation to Confidence: Shifting Parental Attitude and Perception Toward Ketogenic Diet in Treating Children With Drug-Resistant Epilepsy. Cureus. 2025 Mar 29;17(3):e81408. doi: 10.7759/ cureus.81408. google scholar
19. Metzger S, Lee J, McDavid L. Literature Review: Support for caregivers of children on the ketogenic diet for epilepsy and other neurologic disorders. Epilepsy Behav. 2024 Jul;156:109830. doi: 10.1016/j.yebeh.2024.109830. google scholar