Conference Coverage

Reasons for noncompliance to ketogenic diet explored


Key clinical point: Careful screening of patients and caregivers is essential prior to initiation of the ketogenic diet.

Major finding: More than one-third of children (43%) discontinued the ketogenic diet before the end of a 3-month trial period.

Data source: A prospective evaluation of 64 patients with intractable epilepsy and their families who were educated about the ketogenic diet at Dayton Children’s Hospital.

Disclosures: Dr. Kumar reported having no financial disclosures.


AT AES 2016


HOUSTON – More than one-third of children discontinued the ketogenic diet prior to completion of a 3-month trial because of reported difficulty, a single-center study showed.

The findings underscore the importance of carefully screening patients and their families prior to initiating the ketogenic diet, lead author Gogi Kumar, MD, said in an interview at the annual meeting of the American Epilepsy Society. “We always talk about how and when the ketogenic diet should be used, but we don’t talk about the barriers to continuing the diet, like the socioeconomic aspects that determine the feasibility of continuing the diet,” said Dr. Kumar, a pediatric neurologist at Dayton (Ohio) Children’s Hospital. “If it’s a single mom who has two jobs and has a kid with intractable epilepsy, she cannot do it because ketogenic diets are complex and very intense. If the child has a gastrostomy tube and you can feed them a formula it might work, but then you have to bring them in for multiple lab tests. The family has to be very committed. They have to have resources.”

Dr. Gogi Kumar Doug Brunk/Frontline Medical News
Dr. Gogi Kumar
In an effort to evaluate the challenges that children have in complying with a ketogenic diet, Dr. Kumar and dietitian Alison Ruffin prospectively evaluated 64 patients with intractable epilepsy and their families who were educated about the ketogenic diet at Dayton Children’s Hospital between Feb. 1, 2013, through May 31, 2016. Of these, 35 (55%) started on a ketogenic diet. Patients were asked to commit to a 3-month trial period and most (83%) were started on a classic ketogenic diet using gradual initiation without fasting, while 11% used a modified Atkins’s diet and 6% used the Low Glycemic Index Treatment. Variables of interest included patient demographics, social history, epilepsy history, prediet nutritional status, nutritional management, type and route of diet, diet benefits, diet side effects, and length of time on diet.

The mean age of study participants was 7.4 years, and feeding was accomplished orally in 43%, by tube in 40%, and both routes in 17%. Of the patients who were started on a ketogenic diet, 57% continued on the diet for more than 3 months. Overall, 55% of patients experienced at least a 50% reduction in seizures, while 45% experienced less than a 50% reduction in seizures.

Dr. Kumar went on to report that 15 patients (43%) discontinued the diet before the 3-month trial period. Of these 15 patients, 3 had adverse effects after initiation of the diet and the remaining 12 reported stopping the diet because of difficulty, 1 of whom also reported cost as a barrier. Of the 12 patients who stopped the diet because of difficulty, 8 were on the classic ketogenic diet and 4 were on other diet therapies. All were oral eaters and 50% lived in a single-parent household or had shared parenting in multiple households with poor communication. The remaining 50% had married parents, of whom 25% were teenagers who did not want to commit to the diet and 25% were children with parents who found the diet difficult. Of families who discontinued the diet early, 58% of parents had difficulty learning how to manage the complexity of the ketogenic diet and/or had limited cooking skills.

“Before you try someone on the ketogenic diet, we should evaluate the family’s educational level, their commitment, and their support systems so that we can help them overcome any barriers. It is important to have social workers as part of the ketogenic diet team to help with the process,” Dr. Kumar said. She reported having no financial disclosures.
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