Abstract
ABSTRACT: Aim: The purpose of this study was to describe the status of ventilator use, respiratory problems, and caregiver well-being relating to patients with amyotrophic lateral sclerosis (ALS) using a home-based ventilator as well as to examine the relationship among ventilator use, respiratory problems, and caregiver well-being. Methods: Patients with ALS (n = 141) registered in the Severe-Rare Disease Center of the Korean Center for Disease Control and their caregivers (n = 83) were surveyed from August 2008 to April 2009. Trained research assistants visited patient homes; collected data using questionnaires; and then performed analyses with descriptive statistics, [chi]2 test, and t test as well as partial correlation analysis using SPSS WIN 18.0. Results: Thirty-two patients used noninvasive ventilation (NIV), and 109 used tracheostomy and mechanical ventilation (TMV). One hundred of the TMV patients used the ventilator 24 hours per day. The ventilator circuit exchange cycle was 0.96 times per month for NIV patients and 1.17 times per month for TMV patients (t = -4.91, p < .001). However, NIV patients had a higher level of tidal volume than TMV patients (t = 3.34, p = .001). Approximately 22% of NIV patients and 24% of TMV patients used one or more physiotherapies for airway clearance. There was a significant relationship between hypoventilation symptoms and caregiver burden (r = .31, p = .006). Hypoventilation symptoms were positively related to physiotherapy (r = .24, p = .042), and physiotherapy was positively related to caregiver burden (r = .24, p = .043). Conclusion: On the basis of the findings of this study, care management for patients with ALS with a home-based ventilator as well as their caregiver's well-being was relatively inappropriate. We recommend that community-based support programs and burden relief programs be considered as managerial interventions.