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Journal of the Korean Neurological Association 2009;27(4): 320-331.
Clinical Features, Disability and Socioeconomic Status of Patients With Muscular Dystrophy in Korea
오승헌, 강대룡a 최영철b 최병옥c 김대성d 정두신e 박경석f 문기태g 김승민b 김병준h 임정근i 주인수j 조정희k 김진호l 손은희m 노학재e 김종국n 이영배o 김남희p 서범천h 대한신경근육질환학회q
차의과학대학교 신경과학교실, 연세대학교 의과대학 신경과학교실b, 이화여자대학교 의과대학 신경과학교실c, 부산대학교 의학전문대학원d, 순천향대학교 의과대학 신경과학교실e, 서울대학교 의과대학 신경과학교실f, 성균관대학교 의과대학 신경과학교실h, 계명대학교 의
국내 근육디스트로피 환자의 임상양상, 장애 및 사회경제학적 실태
Seung-Hun Oh
Departments of Neurology, CHA University School of Medicine, Yonsei University College of Medicineb, Ehwa Womans University College of Medicinec, Pusan National University School of Medicined, Soonchunhyang University College of Medicinee, Seoul National University College of Medicinef, Sungkyunkwan University School of Medicineh, Keimyung University College of Medicinei, Ajou University School of Medicinej, National Health Insurance Corporation Ilsan Hospitalk, Chosun University College of Medicinel, Chungnam National University College of Medicinem, Kosin University College of Medicinen, Gachon Medical Schoolo, Dongguk University College of Medicinep, Department of Clinical Trials Center, Yonsei University College of Medicinea, Health Insurance Review and Agencyg, Seoul, Korea, The KOREAN Society of Neuromuscular Disordersq
Abstract
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. Key Words: Muscular dystrophy, Survey, Health, Epidemiology, Socioeconomic
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