Abstracts

Rationale: Parents of children with epilepsy face typical psychosocial stressors as well as those specifically associated with their child’s chronic illness. While Ketogenic Diets (KDs) can reduce seizure burden in children with epilepsy, the strict dietary restrictions can often make day-to-day maintenance challenging, adding to caregiver stress. Our center utilizes a team approach to managing KD care with a team composed of physicians, Advanced Practice Providers, Registered Dietitians, and Social Workers (SW). The goal of this study was to explore the common adverse psychosocial factors (APFs) affecting this patient population and to examine their prevalence in children who are unable to maintain the diet and discontinue the diet early. Methods: In 2015 a standardized SW assessment was instituted to identify stressors that may impact patients’ and families maintenance of KDs. All patients who pursued treatment from 1/01/2015 to 1/01/2018 who underwent initial SW assessment were included in this study. The initial Social Work Assessments completed during evaluation for dietary therapy were reviewed for the presence of five APFs: History of caregiver mental health concerns, history of patient behavioral concerns, caregiver separation, financial difficulty, and lack of available external caregiving supports. Length of time on the diet and reasons for diet discontinuation, including Diet Non-Effectiveness, Social Challenges, and Side Effects, were also documented. As the program asks that the ketogenic diet be maintained for six months before being deemed unsuccessful, we used discontinuations prior to 6 months as a criteria for premature diet termination. Results: Of 51 total patients, 33 were identified as having 1 or more APF. The most common APFs identified were a history of patient behavioral concerns and lack of available external supports. There were 13 children (25%) who discontinued the diet prematurely. Of those early discontinuations, 9 of 13 had at least one APF, while 5 of 13 had two or more. In the children who maintained the diet beyond six months, 24 of 38 had =1 APF and 13 of 38 had =2 APF.   Patient behavioral concern was identified as the most frequent APF in children who discontinued early.The most common reasons cited for discontinuation were Non-effectiveness (n=10), Social Challenge (n=4), and Side Effects (n=2).  Three children discontinued due to a combination of these reasons. Conclusions: This study explores the psychosocial factors affecting families whose children initiate a KD and identifies the presence of APFs in many of these families. It provides a groundwork for the role of active social work presence on the KD team and highlights areas for intervention such as providing resources for patient behavioral issues.  Better understanding of how psychosocial factors impact compliance to dietary therapy, communication with medical team, and ultimately diet success, will allow us to provide appropriate supports for patients considering the diet.  Future research will address psychosocial interventions to maximize success on the KDs for epilepsy management. Funding: None