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KMID : 1143420210140100549
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Public Health Weekly Report
2021 Volume.14 No. 10 p.549 ~ p.559
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Pilot Study of the Quality of Life for Rare Disease Patients in Korea
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Jang Ji-Young
Ahn Youn-Jhin
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Abstract
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Most rare diseases are degenerative and chronic because there is no effective treatment or medicine. Theses factors are
thought to be related to poor quality of life (QoL) in rare disease patients. There is a need for a policy to improve patients’
QoL, but basic research on QoL of rare disease patients is still lacking in Korea. This study performed a pilot study to assess the feasibility of the ‘World Health Organization Quality of Life Scale-Brief’ for rare disease patients. The online survey method was used to protect personal information. In this pilot study, rare disease patients had a lower QoL value compared to people without a rare disease. Domains of QoL were highly correlated except for the ‘social relationship’ domain. In addition, this study could not find any contribution of social relationship to overall QoL. Further study is needed to evaluate QoL considering each rare disease’s feature and the factors affecting QoL in a large number of patients with rare diseases.
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KEYWORD
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Rare disease, Quality of life, World Health Organization Quality of Life Scale-Brief, Online survey
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