Health-related quality of life and medication use among individuals with Angelman syndrome

Khan Nasreen; Cabo Raquel D.; Burdine RebeccaTan Wen-Hann J.Keary ChristopherOchoa-Lubinoff Cesar M.Bird LynneSTARS Investigators

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Health-related quality of life and medication use among individuals with Angelman syndrome

机译：Health-related quality of life and medication use among individuals with Angelman syndrome

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PurposeThe 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).MethodsThe 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).Results87 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.ConclusionThis study highlights the impact of AS on HRQoL and medication utilization among adolescents and adults individuals with AS.

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《Quality of life research: An international journal of quality of life aspects of treatment, care and rehabilitation》 |2023年第7期|2059-2067|共9页
作者
Khan Nasreen; Cabo Raquel D.; Burdine RebeccaTan Wen-Hann J.Keary ChristopherOchoa-Lubinoff Cesar M.Bird LynneSTARS Investigators;
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作者单位

RWEC LLC;

Ovid Therapeut Inc;

Dept Mol Biol,Princeton UnivBoston Childrens Hosp,Harvard Med SchMassachusetts Gen Hosp Children,Harvard Med SchDiv Dev Behav Pediat,Rush UnivDept Pediat,Univ Calif San Diego;

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正文语种英语
中图分类医药、卫生;
关键词
HRQoL; EQ-5D; Medication utilization; VAS; Healthcare burden; Healthcare economics; Angelman Syndrome; SOCIAL/ECONOMIC COSTS; EUROQOL;

Health-related quality of life and medication use among individuals with Angelman syndrome

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