Caregivers’ Perceptions and Usage of Ketogenic Diet for ASD, PWS and RTT: A Pilot Study and Mini-Review

Abstract Purpose of Review In recent years, there has been a growing interest in the therapeutic role of the ketogenic diet (KD) in neurodevelopmental disorders. The KD may have therapeutic effects on core symptoms of neurodevelopmental disorders such as autism spectrum disorder (ASD) and Prader Willi syndrome (PWS), yet more information is needed to assess its feasibility and current usage in these populations. The aim of this study was to assess and understand both perceptions and use of the ketogenic diet (KD) among caregivers of people with ASD, PWS and Rett syndrome (RTT). Recent Findings Most caregivers (82%) reported that the KD is feasible while half (51.3%) reported interest in a randomized controlled trial. Among the 8 caregivers who used the KD, 50% reported improvement in symptoms including reduced irritability or moodiness, frequency of temper tantrums, and inflexible thinking, and improved social skills, weight control, and language function. Parents who had previously used the KD reported significantly higher stress levels on the Perceived Stress Scale – 10 (PSS- 10; p =.03). The Repetitive Behavior Scale – Revised (RBS-R) Restricted Behavior subscale also had trending significance between groups, with the ASD groups having significantly higher scores on this scale ( p =.06). Summary Despite the potential and real challenges identified by caregivers in introducing a KD to a child or adult with ASD, PWS and RTT, most still reported that this intervention is feasible. A large controlled and randomized study is needed to further examine the effects of a KD on core symptoms, mood, and behavior in those with neurodevelopmental disorders, as well as in stress levels among their caregivers. Finally, caregivers were able to share their motivation for using the KD, perceived or experienced challenges and resources needed which highlight the need for both effective strategies to address the various barriers as well as caregiver and child’s psychoeducation. This information is key in designing an appropriate RCT that is both feasible and tolerable.