Optimization of Data Collection for Clinics Specializing in Dietary Therapies for Epilepsy
Abstract number :
3.369
Submission category :
10. Dietary Therapies (Ketogenic, Atkins, etc.)
Year :
2019
Submission ID :
2422262
Source :
www.aesnet.org
Presentation date :
12/9/2019 1:55:12 PM
Published date :
Nov 25, 2019, 12:14 PM
Authors :
Gabrielle Sarlo, American University; Amy Kao, Children's National Medical Center; Kathleen F. Holton, American University
Rationale: The International Ketogenic Diet Study Group has highlighted the importance of standardized research protocols and dietary therapy. An examination of data collected from dietary therapy clinic visits will offer insight into improvements to inform clinical care. This study aims to provide an analysis of medical record data from the Dietary Therapies for Epilepsy Clinic at Children's National Medical Center. The objective of this study is to use data collected from this dietary therapy clinic to help create a standardized dietary therapy form in hopes of addressing two major goals: (1) to allow better and easier physician comparison among visit results, and (2) to develop a structured process to assess therapy effectiveness, types of improvement, adverse outcomes, and patient satisfaction. Methods: A retrospective chart review was conducted for patients ≤18 years who visited the Dietary Therapies for Epilepsy Clinic at Children's National Medical Center between the years of 2015-2018. Exclusion criteria included patient transfers, records with missing dietary initiation information, or records missing follow-up information. Out of 58 possible records, 46 records were included for analysis. Not all records were able to be utilized for every analysis due to missing data. Descriptive data includes information on demographics, diet initiation, 3-month follow-up results, and the amount of missing data in the records. Results: Of 44 medical records, 31(71%) had a 3-month diet visit, with the visit occurring, on average, 107 (±37) days post-diet initiation. Of those 31, 17(53%) had a change in medication regimen compared to the prior visit and 2(6%) were missing medication information. For seizure improvement, only 11(36%) saw a reduction in seizures. In terms of being able to calculate weekly seizure occurrence from charts, only 18 of 27(67%) provided enough information for a weekly seizure count to be generated. Furthermore, only 3 of 27(11%) provided an estimated percentage of seizure reduction. In terms of change in seizure severity and duration, 12(39%) were missing information on changes in severity and 14(45%) were missing information on changes in duration. More so, 4(13%) saw an increase in severity and 2(7%) saw an increase in seizure duration. Missing information was also evident in assessing tolerance 10(32%). For assessing anthropometric measurements, weight was obtained for all records at 3 months (N=31), while height was only obtained for 20, thus limiting the ability to monitor growth in children following the diet. Finally, despite only 36% of records identifying a reduction in seizures and 42% reporting other non-seizure benefits, it was determined that 26(84%) of patients should continue on the diet. Conclusions: This study reports on data collected at a critical point in dietary therapy (3 months), when continuation or termination of treatment is typically decided. Critical data was missing from some charts, suggesting that a system of standardized data collection would be beneficial. The results of this study are being used to create a patient form that collects information including seizure improvement, diet tolerance, side effects, growth parameters, and potential confounding factors. This form may be able to improve clinical care by standardizing the information collected by all physicians in a particular program. This tool could be used in multicenter trials to facilitate the collection and comparison of data from dietary therapy clinics nationwide, which then can be used to help direct treatment recommendations. Funding: No funding
Dietary Therapies