PhD Candidate American Univeristy Washington DC, District of Columbia
Rationale: Dietary therapy is a critical treatment option for refractory epilepsy in children and requires a substantial commitment from caregivers. It is helpful for neurologists to understand caregiver perspectives in order to help ease caregiver challenges and optimize treatment. Methods: An online survey is being conducted among caregivers of children that have previously undergone or are currently using dietary therapy. De-identified data is being collected via an anonymous Qualtrics survey of caregivers. This abstract contains preliminary data on 115 surveys collected thus far. The survey includes multiple choice, Likert scale, open-ended, and closed ended questions. Results: Thus far, 87% of respondents are from the U.S. The median age of epilepsy diagnosis was two (2) years and caregivers report having tried a median of four(4) antiepileptic drugs before dietary therapy. Most children have generalized epilepsy (43%) or combined generalized and focal epilepsy (38%), and common diagnoses include Doose syndrome (27%), Dravet syndrome (17%), and Glucose Transporter 1 Deficiency syndrome (10%). Most children are orally fed (81%) and are following or have followed a Ketogenic Diet (65%) or Modified Atkins Diet (24%) with a duration of at least six months (72%). Dietary therapy was reported to be somewhat challenging for patients and more than somewhat challenging for caregivers. Patient challenges focused on psychosocial issues and included the diet being too restrictive (33%), food refusal (29%), unhappiness with home and/or school meals (17%), unpalatable (13%), stigma/bullying (12%), compliance issues (10%), and too easy to ‘cheat’ (3%). Caregiver difficulties included caregiver stress (71%), increased food expenses (63%), family stress (62%), reduced family outings/social restriction (60%), child complaints (31%), lack of support from the clinic (17%), and lack of time to do the diet well (17%). Despite these challenges, caregivers reported high levels of happiness (9/10) and support (8/10) during therapy. When asked what would have made the family feel more supported, suggested ideas included food resources, educational literature, and the importance of connecting with other families for support. Conclusions: Psychosocial issues are a significant concern for caregivers. Conversations on how to reduce caregiver and family stress, reduce food expenses, and improve limitations on social outings may make a significant impact on caregivers. Future directions include provision of: (1) recipes and resources on: meal creation and cooking, food presentation/palatability, age specific challenges, and ways to reduce meal costs; (2) educational resources for school/extended family; and (3) creation of online and in-person support groups. Findings from this survey will help inform dietary therapy clinics on how best to support families of children with epilepsy to optimize treatment and minimize quality of life issues. Funding: Please list any funding that was received in support of this abstract.: No funding was received in support of this abstract.