Current Status of the Diagnosis and Management of Amyotrophic Lateral Sclerosis in Korea: A Multi-Center Cross-Sectional Study |
| |
Authors: | Jong Seok Bae Yoon-Ho Hong WonKi Baek Eun Hee Sohn Joong-Yang Cho Byung-Jo Kim Seung Hyun Kim The Korean ALS/MND Research Group |
| |
Affiliation: | aDepartment of Neurology, Inje University College of Medicine, Busan, Korea.;bDepartment of Neurology, Seoul National University College of Medicine, Seoul, Korea.;cDepartment of Neurology, Hanyang University College of Medicine, Seoul, Korea.;dDepartment of Neurology, Chungnam National University College of Medicine, Daejeon, Korea.;eDepartment of Neurology, Korea University College of Medicine, Seoul, Korea. |
| |
Abstract: | Background and PurposeRecently 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.MethodsThe 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.ResultsIn 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.ConclusionsThe 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. |
| |
Keywords: | amyotrophic lateral sclerosis diagnosis Korea palliative care treatment |
|
|