Bibliographic Details
| Title: |
Health-related quality of life and medication use among individuals with Angelman syndrome. |
| Authors: |
Khan, Nasreen1 (AUTHOR) Nasreen.khan@rwecon.com, Cabo, Raquel2 (AUTHOR), Burdine, Rebecca D.3 (AUTHOR), Tan, Wen-Hann4 (AUTHOR), Keary, Christopher J.5 (AUTHOR), Ochoa-Lubinoff, Cesar6 (AUTHOR), Bird, Lynne M.7 (AUTHOR) |
| Source: |
Quality of Life Research. Jul2023, Vol. 32 Issue 7, p2059-2067. 9p. 5 Charts, 2 Graphs. |
| Subject Terms: |
*QUALITY of life, *ANGELMAN syndrome, *AGE groups, *VISUAL analog scale, *DRUGS |
| Abstract: |
Purpose: The primary goal of this analysis is to describe the health-related quality of life (HRQoL), medical history, and medication use among adolescents and adults individuals with Angelman syndrome (AS). Methods: The analysis uses baseline data collected during the STARS study, a double-blind placebo controlled trial of gaboxadol (OV101) in adolescents and adults with AS. The HRQoL was estimated using EuroQoL 5-Dimension 5-Level (EQ-5D) health questionnaire proxy 1 version, which was completed by the caregivers. EQ-5D consists of two parts, a 5-dimension descriptive and a visual analogue scale (VAS) component. The utility score derived from EQ-5D ranges from 0 to 1 (perfect health) and VAS ranges from 0 to 100 (perfect health). Results: 87 individuals with AS were included in the present analysis. The mean utility score was 0.44 ± 0.20 and VAS score was 84 ± 1.5. The EQ-5D data indicated that the self-care, mobility and daily activities were most impacted. All adolescents (100%) and most adults (93%) had at least moderate problems with self-care activities, such as washing or dressing themselves. More than half (55%) of the adolescents and adults had at least moderate issues with mobility and usual activities. Approximately, 30% of adolescents and adults had moderate to extreme problems with anxiety/depression. High baseline concomitant use of medications was observed across both age groups with an average of 5 medications being used per person. Conclusion: This study highlights the impact of AS on HRQoL and medication utilization among adolescents and adults individuals with AS. [ABSTRACT FROM AUTHOR] |
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