International stakeholder engagement on clinical care and research for nocturnal hypoxaemia in pulmonary fibrosis
Abstract
Background
Nocturnal hypoxaemia is common in people with pulmonary fibrosis (PF). This study aimed to explore current practice and establish global perspective on research priorities and outcome measures of importance in sleep assessment and treatment of nocturnal hypoxaemia for PF.
Methods
People with PF, as well as healthcare professionals (HCPs) including clinicians and researchers with expertise in PF, sleep medicine, and oxygen therapy, were recruited internationally to participate in a mixed-methods online survey followed by online focus groups.
Results
A total of 68 people with PF and 73 HCPs from 29 countries completed the survey, with 14 and 36 joining the focus groups, respectively. 51% of patients had previous sleep assessment, with 75% of the remaining expressing its need as part of the disease assessment for PF. 64% of HCPs performed sleep assessments routinely or as clinically indicated, with 82% indicating the assessment being very or somewhat important. The top research priority from people with PF and HCPs was treatment effects of nocturnal hypoxaemia on symptom burden (including health-related quality of life [HRQoL]). Other key research priorities identified were safety and tolerability of nocturnal oxygen therapy, treatment effects of nocturnal hypoxaemia on mortality and pulmonary hypertension, diagnostic approaches for assessing sleep and nocturnal hypoxaemia, predictors of nocturnal hypoxaemia, developing a user-friendly oxygen therapy device, and patient awareness of the significance of nocturnal hypoxaemia. For outcome measures of importance, both groups prioritised HRQoL. In addition, people with PF highly ranked forced vital capacity, nocturnal oxygenation status, and apnoea-hypopnoea index, while HCPs selected long-term sequelae such as survival and development of PH. Impact of nocturnal hypoxaemia and sleep disturbance on cognitive performance was raised by people with PF as a key research topic, which was agreed by HCPs.
Conclusion
This study provides important insights into stakeholders’ priorities to guide future research on sleep assessment and treatment of nocturnal hypoxaemia in PF.
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