To describe the baseline quality of life (QoL) in adolescents and adults with Angelman syndrome (AS), as measured by the EuroQoL 5-Dimension 5-Level (EQ-5D) instrument.

The Phase 2 STARS study was a randomized, double-blind, placebo-controlled trial of OV101 (gaboxadol) in adolescents and adults with AS. We used the EQ-5D data collected during the Baseline visit to describe the participants QoL. The EQ-5D measured parental/caregiver perceptions of the participant’s QoL. The EQ-5D descriptive system comprises 5 dimensions: mobility, self-care, usual activities, pain/discomfort, and anxiety/depression, each assessed at 5 levels: no problems, slight problems, moderate problems, severe problems, and extreme problems.

EQ-5D baseline data was available on eighty-seven participants (mean age, 22.6 ± 6.9 years). Out of the 5 dimensions of EQ-5D, 50% of caregivers reported that the participants had (i) extreme problems in self-care activities; (ii) moderate problems in usual activities and mobility; and (iii) only slight depression/anxiety problems. Pain and discomfort were the least impacted by AS.