Care Status of the ALS Patients With Long-Term Use of Tracheostomy Tube.

Abstract

ObjectiveTo evaluate the care status of the amyotrophic lateral sclerosis (ALS) patients with long-term use of tracheostomy tube by caregivers of ALS patients.MethodsA 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.ResultsIn 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.ConclusionAccording 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.