J Korean Neurol Assoc.
2009 Nov;27(4):320-331.
Clinical Features, Disability and Socioeconomic Status of Patients With Muscular Dystrophy in Korea
- Affiliations
-
- 1Department of Neurology, CHA University School of Medicine, Korea.
- 2Department of Neurology, Yonsei University College of Medicine, Korea. ycchoi@yuhs.ac.kr
- 3Department of Neurology, Ehwa Womans University College of Medicine, Korea.
- 4Department of Neurology, Pusan National University School of Medicine, Korea.
- 5Department of Neurology, Soonchunhyang University College of Medicine, Korea.
- 6Department of Neurology, Seoul National University College of Medicine, Korea.
- 7Department of Neurology, Sungkyunkwan University School of Medicine, Korea.
- 8Department of Neurology, Keimyung University College of Medicine, Korea.
- 9Department of Neurology, Ajou University School of Medicine, Korea.
- 10Department of Neurology, National Health Insurance Corporation Ilsan Hospital, Korea.
- 11Department of Neurology, Chosun University College of Medicine, Korea.
- 12Department of Neurology, Chungnam National University College of Medicine, Korea.
- 13Department of Neurology, Kosin University College of Medicine, Korea.
- 14Department of Neurology, Gachon Medical School, Korea.
- 15Department of Neurology, Dongguk University College of Medicine, Korea.
- 16Department of Clinical Trials Center, Yonsei University College of Medicine, Korea.
- 17Health Insurance Review and Agencyg, Seoul, Korea.
- 18The KOREAN Society of Neuromuscular Disorders, Korea.
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.
