[A cross-sectional study of the current status of respiratory home care patients and their caregivers in Osaka Prefecture].

Abstract

Background: The importance of the home care of patients with chronic respiratory failure has been emphasized, but the status of the patients and their caregivers have not been comprehensively evaluated.

Methods: We performed a cross-sectional analysis of 242 patients treated at home with long-term oxygen therapy (LTOT) and/ or non-invasive positive pressure ventilation (NPPV) and of their caregivers, using a questionnaire survey.

Results: A total of 176 patients responded. The patients' mean age was 74.5 years, and 80.7%, 16.5%, and 1.7% of them were treated with LTOT, LTOT and NPPV, and NPPV, respectively. Of these, 29 patients lived alone, and 11 of whom had no caregivers. The SF-8 questionnaire, a health-related quality of life (HRQOL) scale, showed that the patients' HRQOL was lower than the Japanese standard. Patients with severe dyspnea were not all designated as requiring a high care level according to the Long-Term Care Insurance System. A total of 155 caregivers responded to the questionnaire, and their mean age was 64.7 years; 81% of them were women and 67.7% were the patients' spouses. The Burden Index of Caregivers (BIC-11), which is a multidimensional short care burden scale, showed that they bore the burden of patient care, comparable to the caregivers of patients with intractable neurological diseases. The patients and their caregivers required several services including a family doctor, public aid, and short-term hospitalization.

Conclusions: This study highlighted the poor HRQOL of patients provided with LTOT and/or NPPV, and the considerable burden on their caregivers. Current respiratory home care should be reviewed thoroughly, and further measures to support the patients and their caregivers should be implemented.