To date, 21 caregivers (M=47 years old; 76% female) and 2 clinicians have been interviewed. Patients (M=14 years old; range: 4-31 years) had been receiving FFA at least 5 months (and up to 25 months, M=10 months).

Parents/caregivers reported both seizure-related (i.e., reductions in seizure activity, seizure triggers, post-ictal recovery times) and non-seizure-related benefits (i.e., cognition, alertness, problem solving, education, mood, motor function, sleep quality, speech) with FFA treatment. Caregivers reported feeling less overwhelmed, improved mood, and less personal and family stress.  Clinicians independently corroborated caregiver reports.

Parents/caregivers reported significantly lower fatigue and sleep disturbance T-scores and higher global mental health and resilience T-scores than a normative sample of DS caregivers from a previous study to develop measures of caregiving stress and benefit (p’s < 0.05).

Caregivers reported numerous seizure- and non-seizure-related benefits of FFA treatment for their child, themselves, and family. Many reported feeling hope for the first time since their child was diagnosed with DS. FFA treatment is associated with meaningful positive outcomes in numerous QOL domains for patients with DS and their families.