title: Care Status of the ALS Patients With Long-Term Use of Tracheostomy Tube.
abstract: OBJECTIVE
  To evaluate the care status of the amyotrophic lateral sclerosis (ALS) patients with long-term use of tracheostomy tube by caregivers of ALS patients.
  
  
  METHODS
  A survey was conducted in the form of questionnaires to ALS patients and their caregivers. All measurements were performed by two visiting nurses. For statistical analysis, SPSS ver. 22.0 and Mann-Whitney U test on non-normal distribution were used.
  
  
  RESULTS
  In total, 19 patients (15 males and 4 females) and their caregivers participated in the survey. In the case of patients, the average duration of care was 5.9±3.7 years, and the mean periods of illness and tracheostomy were 5.3±3.2 years and 3.0±2.6 years, respectively. Replacement intervals were 14 days in 11 patients, 7 days in 4 patients, 28 days in 2 patients, and 21 days in 1 patient. One patient was unable to provide an accurate replacement interval. Eighteen (99%) caregivers had experience of adding volume to a cuff without pressure measure in the following instances: due to patients' needs in 7 cases, air leakage in 7 cases, and no reason in 4 cases. Mean pressure of tracheostomy cuff was 40±9.4 cmH2O, and air volume of tracheostomy cuff was 6.7±3.2 mL, but real mean volume was 7.0±2.9 mL. The number of suctioning for airway clearance was a mean 27.5±18.2 times a day.
  
  
  CONCLUSIONS
  According to this survey, we notice that almost all the patients and caregivers had an erroneous idea about cuff volume and pressure. Moreover, education and long-term professional care of tracheostomy cannot be overemphasized in this manner.
authors.affiliation: Department of Rehabilitation Medicine, Pusan National University Hospital, Pusan National University School of Medicine, Busan, Korea.
authors.forename: Yeo Jin
authors.initials: YJ
authors.lastname: Park
authors.affiliation: Department of Rehabilitation Medicine, Pusan National University Hospital, Pusan National University School of Medicine, Busan, Korea.
authors.forename: Jesang
authors.initials: J
authors.lastname: Lee
authors.affiliation: Department of Rehabilitation Medicine, Pusan National University Hospital, Pusan National University School of Medicine, Busan, Korea.
authors.forename: Sang Hun
authors.initials: SH
authors.lastname: Kim
authors.affiliation: Department of Rehabilitation Medicine, Pusan National University Hospital, Pusan National University School of Medicine, Busan, Korea.
authors.forename: Sung Hwa
authors.initials: SH
authors.lastname: Ko
authors.affiliation: Department of Rehabilitation Medicine, Pusan National University Hospital, Pusan National University School of Medicine, Busan, Korea.
authors.forename: Myung Jun
authors.initials: MJ
authors.lastname: Shin
authors.affiliation: Department of Rehabilitation Medicine, Pusan National University Hospital, Pusan National University School of Medicine, Busan, Korea.
authors.forename: Jae Hyeok
authors.initials: JH
authors.lastname: Chang
authors.affiliation: Department of Rehabilitation Medicine, Pusan National University Hospital, Pusan National University School of Medicine, Busan, Korea.
authors.forename: Yong Beom
authors.initials: YB
authors.lastname: Shin
keywords: Amyotrophic lateral sclerosis; Caregiver; Long-term care; Tracheostomy