Abstracts

PARENTS PERSPECTIVE ON QUALITY OF LIFE IMPROVEMENT IN PATIENTS WITH INTRACTABLE EPILEPSY RECEIVING A KETOGENIC DIET

Abstract number : 1.281
Submission category : 8. Non-AED/Non-Surgical Treatments (Hormonal, ketogenic, alternative, etc.)
Year : 2009
Submission ID : 9664
Source : www.aesnet.org
Presentation date : 12/4/2009 12:00:00 AM
Published date : Aug 26, 2009, 08:12 AM

Authors :
V. Driscol, J. Le Pichon, L. Vaughn, L. Thomson, G. Womelduff and A. Abdelmoity

Rationale: The ketogenic diet has proven to be an effective method in treating intractable epilepsy. This study, aims to assess ketogenic diet patients’ quality of life from their parents perspective, looking overall at development, alertness, and general well being as compared to before starting the ketogenic diet. Having such data, will help address familys’ and patients’ concerns regarding the ketogenic diet’s overall success. Methods: We conducted a retrospective chart review of all patients who received ketogenic diet therapy, followed from April of 2005 through May 2009 in the pediatric neurology program at Children’s Mercy Hospital (N=57) Four patients were excluded secondary to lack of adequate information in the medical records. Patient history was analyzed for demographic data, Ketogenic diet ratio, type of diet (formula vs. food) and quality of life. Quality of life was measured as a subjective report by the patients’ families of improvement in developmental milestones, academic performance, level of alertness, and improvement in behavioral and psychological well being. This information was reviewed at 1month, 3months, 6months, 1yr and 2 years after initiation of the diet. Results: At one month, 53 patients were reviewed, at 3 months, 42 patients, at 6 months, 28 patients, at one year, 28 patients, and at 2 years, 14 patients were reviewed. After 1 month 38 (71.7%) patients reported an improvement in quality of life, at 3months 30 (71.4%) patients reported an improvement in quality of life, at 6months, 22 (71%) patients continued to have an overall improvement in the quality of life, at one year, 23 (82%) patients reported to have improvement in quality of life, and at two years, 12 (85.7%) patients continued with improved quality of life. Side effects occurred in 13 patients, and were significant enough to stop the diet only in 1 patient. 6 patients had gastrointestinal problems, 3 patients had renal problems, 8 patients had neurological problems , and 8 patients had metabolic side effects. Conclusions: This study, documents the efficacy of the ketogenic diet, not only in improving seizure burden, but in improving overall the patients’ quality of life. The quality of life improvement is higher than what has been previously reported in some other studies. This could be related to the subjective nature of reporting by families. Nonetheless, it is encouraging enough to warrant further investigation. A prospective study with standardized quality of life testing will be our next step in quantifying quality of life improvement in patients with intractable epilepsy on a ketogenic diet.
Non-AED/Non-Surgical Treatments