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국내 근육디스트로피 환자의 임상양상, 장애 및 사회경제학적 실태

Other Titles
 Clinical Features, Disability and Socioeconomic Status of Patients With Muscular Dystrophy in Korea 
 오승헌  ;  강대룡  ;  최영철  ;  최병옥  ;  김대성  ;  정두신  ;  박경석  ;  문기태  ;  김승민  ;  김병준  ;  임정근  ;  주인수  ;  조정희  ;  김진호  ;  손은희  ;  노학재  ;  김종국  ;  이영배  ;  김남희  ;  서범천 
 Journal of the Korean Neurological Association, Vol.27(4) : 320-331, 2009 
Journal Title
 Journal of the Korean Neurological Association 
Issue Date
Muscular dystrophy ; Survey ; Health ; Epidemiology ; Socioeconomic
Background: Since 2001, the Ministry of Health and Welfare in Korea has designated muscular dystrophy (MD) to be a rare and intractable disease, and has ensured that patients with this condition obtain support from the National Health Insurance Corporation for their medical expenditure. However, the health-related and socioeconomic status of Korean patients with MD has yet to be established. Methods: We selected 441 patients with MD who received medical services at 17 neuromuscular centers during 2005. The medical records of selected patients were analyzed, and the subtype of MD was classified by its clinical course and diagnostic tests. A total of 95 patients or their family members participated in this health-related and socioeconomic status survey. Results: Medical record analysis showed similar clinical and diagnostic characteristic data to those published previously in other countries: male predominance, being young at onset, and muscular weakness of the extremities as a predominant symptom in most patients. The diagnostic tests for MD were based on laboratory and electrophysiological studies. The most frequent form of MD among our cohort was Duchenne/Becker muscular dystrophy (42%). Our survey revealed the effect of the patients’ profound disability on their activities of daily living. One-half of the patients were dissatisfied with the medical expenditure support service that was made available to them, and most patients suffered from a financial burden. The most important medical services to be developed in the future are expansion of the public health service or development of a rehabilitation hospital. Conclusions: This is the first multicenter-based epidemiologic study on the health-related and socioeconomic status of patients with MD in Korea. The findings indicate that medical coverage and public health service are currently inadequate and hence should be expanded in the future.
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1. College of Medicine (의과대학) > Dept. of Neurology (신경과학교실) > 1. Journal Papers
Yonsei Authors
Kim, Seung Min(김승민) ORCID logo https://orcid.org/0000-0002-4384-9640
Choi, Young Chul(최영철) ORCID logo https://orcid.org/0000-0001-5525-6861
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