Abstracts

Rationale: The ketogenic diet (KD) is a proven, effective treatment for controlling seizures. Due to the restrictive nature of the diet, nonadherence and discontinuation are common. This may be contributed to by psychosocial issues, lack of knowledge, or lack of emotional and logistical support. Family support groups may address these challenges and help families acclimate to and adhere to the lifestyle change inherent to a dietary intervention. This study aims to 1) describe the implementation and quality assessment of a structured support group at an academic children’s hospital, without designated funds, 2) evaluate the quality of life (QoL) in families of children on KD, and 3) assess the association of KD support group involvement and QoL in families. Methods: During hospital-led family support group meetings at Children’s National Medical Center (CNMC), which occurred bimonthly between January 2018 and May 2019, attendees received qualitative surveys, which include questions relating to attendance at support group meetings and perception of benefit of dietary therapies, and The Parent Response to Child Illness Scale (PRCI). Surveys and PRCI scales were also administered to families during standard outpatient clinic visits, in which dietary therapy options are discussed. Results: Based on the Parent Response to Child Illness Scale, support group attendees (18) reported, on average, higher perceptions of Child Support, Family Life, Autonomy, and Discipline compared to non-attendees, while non-attendees (5) demonstrated slightly higher levels of Confidence. Based upon responses to the qualitative surveys, the ability to talk to or email the dietician and ability to talk to or email the physician were felt to be the most helpful resources for implementing KD in everyday life . Additional helpful resources included emailing/talking to families at CNMC, Facebook groups/social media, blogs/websites, books, and support group meetings. 40% of survey respondents were previously unaware that support groups were an available resource. Conclusions: A hospital-led ketogenic diet family support group provides a valuable resource for improving patient adherence and continuation on the ketogenic diet. Support group attendees report higher perceptions of positive psychosocial factors compared to non-attendees. Furthermore, attendees report learning valuable information and experiencing decreased isolation following attendance. Increased promotion of the availability of the support groups and utilization of media streaming technology could enable higher rates of support group participation for families initiated on the ketogenic diet. A model such as that implemented at CNMC does not require designated programmatic funds and may decrease demands placed on the dietitian and physician outside of clinic hours, while potentially yielding positive treatment outcomes. Funding: No funding