Clinical Features, Disability and Socioeconomic Status of Patients With Muscular Dystrophy in Korea.
- Author:
Seung Hun OH
1
;
Dae Ryong KANG
;
Young Chul CHOI
;
Byung Ok CHOI
;
Dae Seong KIM
;
Du Shin JEONG
;
Kyung Seok PARK
;
Ki Tae MOON
;
Seung Min KIM
;
Byoung Joon KIM
;
Jeong Geun LIM
;
In Soo JOO
;
Jeong Hee CHO
;
Jin Ho KIM
;
Eun Hee SOHN
;
Hak Jae ROH
;
Jong Kuk KIM
;
Yeong Bae LEE
;
Nam Hee KIM
;
Bum Chun SUH
Author Information
1. Department of Neurology, CHA University School of Medicine, Korea.
- Publication Type:Original Article ; Multicenter Study
- Keywords:
Muscular dystrophy;
Survey;
Health;
Epidemiology;
Socioeconomic
- MeSH:
Activities of Daily Living;
Cohort Studies;
Diagnostic Tests, Routine;
Epidemiologic Studies;
Extremities;
Health Expenditures;
Humans;
Korea;
Male;
Medical Records;
Morphinans;
Muscle Weakness;
Muscular Dystrophies;
National Health Programs;
Social Class;
United States Public Health Service
- From:Journal of the Korean Neurological Association
2009;27(4):320-331
- CountryRepublic of Korea
- Language:Korean
-
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.
