Healthcare Journey of Preterm-Born Adults with Respiratory Disease: The EMPOWER survey

Background Preterm birth is a recognized risk factor for lung disease later in life. However, awareness of this risk among preterm-born adults and whether it is discussed with their treating physicians is unknown. The EMPOWER survey assessed awareness of the preterm status among preterm-born adults with asthma and COPD and evaluated its consideration in disease management. Methods Preterm-born subjects aged ≥18 years with physician-diagnosed asthma and/or COPD from France, Germany, Spain, the UK, and the US completed a 34-item online questionnaire. The survey covered socio-demographics, medical history, awareness of perinatal events, and interactions with healthcare providers. Results Of 3175 individuals who initiated the survey, 301 participants (median age, 55 years; IQR, 39–64 years) were included in the final analysis (9.5% response rate). Most respondents knew their gestational age (87%) and birth weight (89%), primarily from parents and caregivers (81%), with just 19% obtaining information from medical records. Over half (58%) reported receiving neonatal intensive care, most commonly assisted ventilation (36%) and nutritional support (24%). While 54% considered preterm birth relevant to respiratory management, 59% had not disclosed this history to their physician. Only 24% reported spontaneous disclosure, and just 11% shared the history in response to physician inquiry. Pediatric monitoring was reported by 45%, but follow-up rarely extended into adulthood. Conclusion Although preterm-born adults with obstructive respiratory disease are aware of their neonatal history, it is seldom integrated into adult respiratory care. Limited patient disclosure, infrequent physician inquiry, and lack of structured long-term follow-up likely contribute to this gap.