International Stakeholder Engagement on Clinical Care and Research for Sleep Assessment and Nocturnal Hypoxemia in Pulmonary Fibrosis.

Abstract

Nocturnal hypoxemia commonly affects people with pulmonary fibrosis (PF). What are the current practices for assessment of sleep and nocturnal hypoxemia in PF, and what are the research priorities and outcome measures of importance for nocturnal oxygen therapy (NOT)? People with PF and health care professionals (HCPs) with expertise in PF, sleep medicine, and/or oxygen therapy, were recruited internationally to participate in mixed-methods online surveys followed by online focus groups. A total of 68 people with PF and 73 HCPs from 29 countries completed the survey, with 14 and 39 joining the focus groups, respectively. Of these, 51% of people with PF had previous sleep assessment. In those that had not, 75% advocated its inclusion in routine PF management. Of HCPs, 64% performed sleep assessments routinely or as clinically indicated, with 82% reporting the assessments as very or somewhat important. The effect of treating nocturnal hypoxemia on symptom burden (including health-related quality of life) was considered the top research priority for people with PF and HCPs. Other research priorities identified were safety and tolerability of NOT, effect of treating nocturnal hypoxemia on mortality and pulmonary hypertension, diagnostic approaches for assessing sleep and nocturnal hypoxemia, predictors of nocturnal hypoxemia, developing a user-friendly oxygen therapy device, and patient awareness of the significance of nocturnal hypoxemia. Both groups prioritized health-related quality of life as the most important outcome measure for evaluating NOT. Additionally, people with PF highly ranked FVC, apnea-hypopnea index, and nocturnal oxygenation status, whereas HCPs selected survival and development of pulmonary hypertension. People with PF raised impact of nocturnal hypoxemia and sleep disturbance on cognitive performance as a key research topic, which was agreed by HCPs. This study provides important insights into stakeholders' priorities to guide future research on sleep assessment and treatment of nocturnal hypoxemia in PF.