Current status of the diagnosis and management of amyotrophic lateral sclerosis in Korea: A multi-center cross-sectional study

Jong Seok Bae, Yoon Ho Hong, Won Ki Baek, Eun Hee Sohn, Joong Yang Cho, Byung Jo Kim, Seung Hyun Kim

Research output: Contribution to journalArticle

12 Citations (Scopus)

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.

Original languageEnglish
Pages (from-to)293-300
Number of pages8
JournalJournal of Clinical Neurology (Korea)
Volume8
Issue number4
DOIs
Publication statusPublished - 2012 Dec 1

Fingerprint

Amyotrophic Lateral Sclerosis
Korea
Cross-Sectional Studies
Demography
Guidelines
Noninvasive Ventilation
Gastrostomy
Tracheostomy
Age of Onset
Research
Patient Care
Databases
Physicians
Education

Keywords

  • Amyotrophic lateral sclerosis
  • Diagnosis
  • Korea
  • Palliative care
  • Treatment

ASJC Scopus subject areas

  • Neurology
  • Clinical Neurology

Cite this

Current status of the diagnosis and management of amyotrophic lateral sclerosis in Korea : A multi-center cross-sectional study. / Bae, Jong Seok; Hong, Yoon Ho; Baek, Won Ki; Sohn, Eun Hee; Cho, Joong Yang; Kim, Byung Jo; Kim, Seung Hyun.

In: Journal of Clinical Neurology (Korea), Vol. 8, No. 4, 01.12.2012, p. 293-300.

Research output: Contribution to journalArticle

Bae, Jong Seok ; Hong, Yoon Ho ; Baek, Won Ki ; Sohn, Eun Hee ; Cho, Joong Yang ; Kim, Byung Jo ; Kim, Seung Hyun. / Current status of the diagnosis and management of amyotrophic lateral sclerosis in Korea : A multi-center cross-sectional study. In: Journal of Clinical Neurology (Korea). 2012 ; Vol. 8, No. 4. pp. 293-300.
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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.",
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N2 - 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.

AB - 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.

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