Japanese White Paper on Home Care for Patients with Respiratory Failure 2024: Insights from Surveys on patients and caregivers

<bold>Background:</bold> More than ten years have passed since the last White Paper was published. <bold>Aim:</bold> To assess the insights into home respiratory care, a nation-wide survey was conducted from 2022 to 2023. <bold>Methods:</bold> The questionnaires were sent to patients and caregivers who had consented in the primary survey or belonged to JFPORD, with response rates of 50% and 26%, respectively. <bold>Results:</bold> On the 454 patients, 302 and 89 were receiving LTOT and LTOT with HMV, respectively. Among the LTOT group, the common conditions were COPD (42%), interstitial pneumonia (34%) and Lung Cancer (7%). Among the LTOT group, pulmonary rehabilitation was instructed for 46% and their common demands regarding LTOT(n=311) were better explanation of the response of the manufacturers (46%) and establishment of oxygen stations (45%) during natural disasters. Concerning wishes for medical staffs, the most common reply (56%) was they wanted to be taught more about symptoms indicating exacerbations. Twenty-five percent had discussed end-of-life care, most commonly initiated when respiratory illness worsened, leading to hospitalization. In the caregivers’ survey (average 68 years, 74% female), 53% reported mMRC grade 1 or higher. On average, caregiving involved 3.9 hours of daily care including 2.1 hours of intensive supervision per day. The BIC-11 revealed that more than half considered caregiving to be a burden overall. Conclusions: For the improvement of well-being in patients and caregivers receiving home respiratory care, it is necessary to establish disaster preparedness measures, in addition to deploying new evidence-based support and health promotion outlined in the white paper.