J Korean Med Sci.  2016 Jun;31(6):976-982. 10.3346/jkms.2016.31.6.976.

Management of Ventilatory Insufficiency in Neuromuscular Patients Using Mechanical Ventilator Supported by the Korean Government

• Kang SW
• Choi WA
• Cho HE
• Lee JW
• Park JH

• KMID: 2373709
• DOI: http://doi.org/10.3346/jkms.2016.31.6.976

Abstract

Since 2001, financial support has been provided for all patients with neuromuscular disease (NMD) who require ventilatory support due to the paralysis of respiratory muscles in Korea. The purpose of this study was to identify ventilator usage status and appropriateness in these patients. We included 992 subjects with rare and incurable NMD registered for ventilator rental fee support. From 21 February 2011 to 17 January 2013, ventilator usage information, regular follow-up observation, and symptoms of chronic hypoventilation were surveyed by phone. Home visits were conducted for patients judged by an expert medical team to require medical examination. Abnormal ventilatory status was assessed by respiratory evaluation. Chronic respiratory insufficiency symptoms were reported by 169 of 992 subjects (17%), while 565 subjects (57%) did not receive regular respiratory evaluation. Ventilatory status was abnormal in 102 of 343 home-visit subjects (29.7%). Although 556 subjects (56%) reported 24-hour ventilator use, only 458 (46%) had an oxygen saturation monitoring device, and 305 (31%) performed an airstacking exercise. A management system that integrates ventilator usage monitoring, counselling and advice, and home visits for patients who receive ventilator support could improve the efficiency of the ventilator support project.

Keyword

Mechanical Ventilator; Respiratory Insufficiency; Neuromuscular Disease; Home Care

MeSH Terms

Adult
Aged
Disease Management
Female
Home Care Services
Humans
Interviews as Topic
Male
Middle Aged
Neuromuscular Diseases/complications/economics/*psychology
Republic of Korea
Respiratory Insufficiency/complications/*prevention & control
Surveys and Questionnaires
Ventilators, Mechanical

Figure

• 

  Fig. 1 Percentage of time of the daily ventilator use for each disease. ALS, amyotrophic lateral sclerosis; SMA, spinal muscular atrophy; †This group includes hereditary ataxia, myasthenia gravis, multiple sclerosis, Charcot-Marie-Tooth disease, Guillain-Barre syndrome, mucopolysaccharidosis, Pompe disease, and Creutzfeldt-Jakob disease. *Statistically significant P value < 0.05;

• 

  Fig. 2 Percentage of type of ventilator use for each disease. IPPV, invasive positive pressure ventilation; NIPPV, non-invasive intermittent positive pressure ventilator; ALS, amyotrophic lateral sclerosis; SMA, spinal muscular atrophy. *Statistically significant P value < 0.05; †This group includes hereditary ataxia, myasthenia gravis, multiple sclerosis, Charcot-Marie-Tooth disease, Guillain-Barre syndrome, mucopolysaccharidosis, Pompe disease, and Creutzfeldt-Jakob disease.

• 

  Fig. 3 A number of patients with regular follow-up observation and respiratory evaluation. f/u, follow-up; +, yes; -, no.

• 

  Fig. 4 Ventilatory status of the subjects visited at home.

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