Optimizing data collection in dietary therapy clinics for epilepsy: A recommendation for standardized data collection forms.

OBJECTIVE: The objectives of this study were to 1) examine medical records from one medium-sized dietary clinic as an example of data being collected clinically, 2) identify data limitations, and then 3) create standardized data collection forms with the long-term goals of improving clinical care and facilitating multicenter data analysis. METHODS: A retrospective chart review was conducted at the Dietary Therapies for Epilepsy Clinic at Children's National Medical Center (CNMC) in Washington, D.C. Patients who initiated dietary therapy between 2015 and 2018 were assessed. Categorical variables were examined via Chi Square or Fisher's Exact tests and continuous variables were assessed via an independent t-test or Mann-Whitney U test, depending on normality. RESULTS: Forty-two patients underwent dietary therapy initiation during this time period, but only 26 had follow-up visit data. Of these patients, 54% reported non-seizure symptom improvement(s), and only 16 had quantitative seizure frequency information available, with 63% being clinical responders. No significant associations were observed between patient or diet characteristics and seizure or non-seizure improvement. Some variables, such as seizure duration, seizure severity, beta-hydroxybutyrate, and dietary compliance were not typically included in the records and therefore could not be evaluated statistically. Variations in seizure type(s), etiology, and clinical diagnoses/syndromes also made it unfeasible to evaluate differences in improvement based on these variables. Standardized data collection forms were created to address these limitations and are included as appendices. SIGNIFICANCE: The results suggest limitations with the clinical data currently being collected. Medium-sized clinics may not see enough patients to study specific epilepsy populations. Standardized patient forms could target these issues, thereby improving clinical care and expanding research opportunities. Future research can test these forms for clinical use and as a collection tool for larger scale research across clinics.