J Clin Neurol.  2012 Dec;8(4):293-300. 10.3988/jcn.2012.8.4.293.

Current Status of the Diagnosis and Management of Amyotrophic Lateral Sclerosis in Korea: A Multi-Center Cross-Sectional Study

Affiliations
  • 1Department of Neurology, Inje University College of Medicine, Busan, Korea.
  • 2Department of Neurology, Seoul National University College of Medicine, Seoul, Korea.
  • 3Department of Neurology, Hanyang University College of Medicine, Seoul, Korea. kimsh1@hanyang.ac.kr
  • 4Department of Neurology, Chungnam National University College of Medicine, Daejeon, Korea.
  • 5Department of Neurology, Korea University College of Medicine, Seoul, Korea.

Abstract

BACKGROUND
AND PURPOSE: Recently published, evidence-based guidelines should alter the management of amyotrophic lateral sclerosis (ALS)/motor neuron disease (MND). However, the newest recommendations for ALS/MND therapy are not reflected in actual clinical practice. We sought to evaluate the current status of the diagnosis and management of ALS in Korea.
METHODS
The Korean ALS/MND research group was organized in 2010, involving more than 50 neurologists from neuromuscular centers in Korea. Participating centers collected data from April to September 2010 on the diagnosis and management of patients with ALS. Data forms from the ALS patient care database, which is a component of the ALS clinical assessment, research, and education program (http://www.outcomes-umassmed.org/ALS/), were modified and used for data collection.
RESULTS
In total, 373 sporadic ALS cases from 35 centers were enrolled. The demographic features and clinical findings were similar to those in previous reports from other countries. The mean age at onset was 50-60 years, and a slight male predominance was observed. The enrolled patients predominantly showed focal onset of cervical or lumbosacral symptoms. Only about one-half of the indicated patients (31.4%) received a physician's recommendation for a parenteral gastrostomy, and 18.1% underwent the procedure. Noninvasive ventilation was recommended in 23% of patients, but applied in only 9.5% of them. Tracheostomy was performed in 12.7% of patients.
CONCLUSIONS
The demographic and clinical features of the diagnosis and management of ALS in Korea are similar to those reported in other countries; however, supportive management, as recommended in evidence-based guidelines, are not yet widely recommended or performed for patients with ALS in Korea.

Keyword

amyotrophic lateral sclerosis; diagnosis; Korea; palliative care; treatment
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