Abstract
Background
Preterm birth is a recognised 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 sociodemographics, 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, interquartile range 39–64 years) were included in the final analysis (9.5% response rate). Most respondents knew their gestational age (87%) and birthweight (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 (35%) 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. Paediatric 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.
Shareable abstract
EMPOWER shows most preterm-born adults know their neonatal history but it is rarely used in care. Few physicians ask about early-life events and lack of follow-up disrupts care, highlighting the need for standardised lifelong history integration. https://bit.ly/4dEzCqo
Introduction
Premature birth is a significant global public health challenge, affecting approximately 10% of all live births worldwide [1, 2]. Preterm infants are typically classified according to gestational age as extremely preterm (<28 weeks’ gestation), very preterm (28–<32 weeks) and moderate-to-late preterm (32–<37 weeks) [2]. Very and extremely preterm infants are at higher risk of developing respiratory distress shortly after birth and usually require admission to neonatal intensive care units for surfactant replacement therapy, respiratory support and supplemental oxygen [3]. While assisted ventilation and supplemental oxygen are lifesaving, they are also recognised risk factors for the development of bronchopulmonary dysplasia (BPD) [4, 5].
Preterm-born individuals face an elevated risk of a broad range of short- and long-term complications [6]. The impact of these conditions often extends beyond the neonatal period, contributing to sustained morbidity, increased healthcare utilisation and potential long-term functional impairment. Cohort studies and meta-analyses have consistently demonstrated that adolescents and adults born preterm exhibit significant and persistent lung function impairment compared with their term-born peers [7–12]. This deficit is particularly pronounced among individuals born extremely preterm (<28 weeks) [7], who show a higher prevalence of recurrent wheezing, asthma-like symptoms and early-life hospitalisations [12–17], factors that increase the likelihood of developing obstructive lung diseases. Large epidemiological studies have confirmed the association between premature birth and a higher risk of airflow limitation, obstructive pulmonary disease, cardiovascular and metabolic morbidities, and premature death in mid-adulthood [18–21].
These findings highlight that a substantial proportion of preterm-born individuals require a continuum of care for their respiratory health, extending from the neonatal period through adulthood. The recently published PRE-TELL survey [22], which enrolled over 1000 paediatricians, allergologists and adult respiratory physicians, revealed only moderate to very low awareness within the respiratory medical community regarding the long-term respiratory consequences of prematurity. It also highlighted a critical gap in the transmission of neonatal information to adult respiratory health services. On these bases, we designed the EMPOWER survey (Patient Journey of Preterm-Born People with Respiratory Dysfunctions) with the specific aims of assessing the awareness of their preterm birth medical history and evaluating whether this neonatal history is taken into account by adult respiratory physicians throughout their healthcare journey.
Methods
Survey design
EMPOWER was a cross-sectional survey conducted in a real-world setting via an online patient platform. The survey questionnaire was developed by the EMPOWER Advisory Committee, a multidisciplinary panel comprising medical specialists and four expert patients. Together, they designed and validated the instrument to ensure that the terminology used was clinically relevant and easy to understand for respondents.
The final questionnaire consisted of 34 items, organised into three sections. The first section focused on screening participants for eligibility. The second section collected sociodemographic and medical information, as well as participants’ awareness of their perinatal medical history. The third section explored participants’ interactions with healthcare providers during consultations throughout their respiratory care journey. The self-administered online questionnaire allowed each participant to complete it at their own pace and express themselves directly without the influence of an interviewer, thus reducing social desirability bias. The questionnaire is available as supplementary file 1.
The survey results were discussed during an online Advisory Board meeting involving medical specialists, representatives from patient advocacy groups, neonatologists, paediatricians and adult respiratory physicians.
Participants
Preterm-born individuals from France, Germany, Spain, the UK and the US were invited to participate in the survey. The questionnaire was available in five languages and was translated from the original English version by a certified translation agency.
Eligible participants were adults (≥18 years) who had been born preterm (<37 weeks’ gestation), had a clinical diagnosis of asthma and/or COPD, and provided electronic informed consent before participation. Participants who did not meet the inclusion criteria or withdrew their express consent before the end of the survey were excluded from the analysis. Participants who live with other chronic diseases (e.g. idiopathic pulmonary fibrosis, cystic fibrosis) were not excluded from the analysis.
Recruitment took place through patient advocacy organisations (Global Foundation for the Care of Newborn Infants (www.gfcni.org) and Adult Preemies Advocacy Network (https://adultpreemies.com)) and through Carenity's platform (https://pro.carenity.com). Participants completed the questionnaire all at once using a unique weblink provided for each respondent. Respondent authenticity was verified by email verification, mobile phone verification, social media profile verification (if available) and their responses to internal quality surveys.
The survey was open from 5 March 2024 to 24 June 2024. The study documents (protocol, informed consent form and patient materials) were submitted for ethical review and approval was obtained in writing on 24 February 2024 from WIRB-Copernicus Group (WCG) investigator's institutional review board. All survey data were self-reported by survey participants. Data was handled in accordance with the General Data Protection Regulation and local regulations.
Statistics
The sample size was opportunistic in the absence of data enabling a power calculation. Target recruitment was set at 300 participants in total, with an expected approximate ratio of 135 participants with asthma, 135 with COPD and 30 with both conditions. Only completed questionnaires were included in the analyses. Data were analysed through descriptive statistics. Qualitative variables are expressed as the number of respondents (n) and percentages (%), while quantitative variables are expressed as mean or median with corresponding standard deviations or interquartile range. Open-ended questions are presented in groups by theme, considering the number of respondents and the frequency of occurrences by theme.
Results
Survey participants and their socio-demographic characteristics
The survey recruitment flow is presented in figure 1. In total, 301 participants were included in the final analysis. The median age was 55 years and most participants were nonsmokers at the time of the surveys (table 1).
FIGURE 1.
Flowchart of EMPOWER survey participants.
TABLE 1.
Sociodemographic characteristics of EMPOWER participants
| Sociodemographic characteristics | N=301 (100%) |
|---|---|
| Sex, n (%) | |
| Male | 78 (26%) |
| Female | 223 (74%) |
| Current age | |
| All participants, years (median (IQR)) | 55 (39–64) |
| <40 years, n (%) | 78 (26%) |
| ≥40–<60 years, n (%) | 107 (36%) |
| >60 years, n (%) | 116 (39%) |
| Smoking status, n (%) | |
| Never smoked | 114 (38%) |
| Former smokers | 108 (36%) |
| Current smokers | 76 (25%) |
| Prefer not to answer | 3 (1%) |
| Country of residence, n (%) | |
| France | 109 (36%) |
| Germany | 39 (13%) |
| UK | 72 (24%) |
| Spain | 37 (12%) |
| USA | 44 (15%) |
| Current respiratory disease, n (%) | |
| Asthma | 134 (45%) |
| COPD | 77 (26%) |
| Asthma and COPD | 47 (16%) |
| Other | 43 (14%) |
| Disease duration (years) and current treatments | |
| Asthma disease duration, median (IQR) | 24 (9–38.5) |
| COPD disease duration, median (IQR) | 7 (3–14) |
| Regular long-term treatment, n (%) | 268 (89%) |
| Rescue treatment, n (%) | 238 (79%) |
| Additional treatments, n (%) | 241 (80%) |
| Hospitalisation history due to respiratory disease, n (%) | |
| Never | 120 (40%) |
| <3 times | 81 (27%) |
| >3 times | 99 (33%) |
| Comorbidities diagnosed by healthcare professionals, n (%) | |
| Respiratory diseases (beyond asthma and COPD)# | 106 (35%) |
| Psychological or emotional disabilities | 85 (28%) |
| Cardiovascular disease | 65 (22%) |
| Sensory disabilities | 52 (17%) |
| Learning and behaviour disabilities | 47 (16%) |
| Metabolic disease | 48 (16%) |
| Neurodevelopmental disabilities | 19 (6%) |
| Kidney disease | 15 (5%) |
| Other | 21 (7%) |
| None | 50 (17%) |
| Do not know | 37 (12%) |
IQR: interquartile range. #: Respiratory diseases reported by participants include bronchiectasis, bronchitis, emphysema, pulmonary fibrosis, alpha-1 antitrypsin deficiency, central sleep apnoea, interstitial lung disease, lung cancer and repeated respiratory infections.
Asthma was the most reported chronic respiratory disease (45%), followed by COPD (26%), while 16% of respondents reported having both asthma and COPD. Additionally, 5% reported having a chronic respiratory disease other than asthma or COPD, while 9.4% reported another respiratory disease in addition to their asthma, COPD, or both. The median age at diagnosis was 20 years for participants with asthma (median duration: 24 years) and 53 years for COPD (median duration: 7 years).
Most participants reported using regular long-term and rescue treatments to manage their chronic respiratory disease. Additionally, 80% had previously received other interventions, including intravenous corticosteroids antibiotics, pulmonary rehabilitation and oxygen therapy, 40% of respondents had never been hospitalised after the neonatal period, 27% had been hospitalised fewer than three times, and 33% had been hospitalised three or more times due to exacerbations of asthma, COPD or other respiratory conditions. Overall, 71% of participants reported at least one comorbidity, with a mean of 2.1 comorbidities per participant (table 1).
Participants’ awareness of their preterm birth status
A total of 87% of respondents reported knowledge of their gestational age at birth and 89% knew their birthweight (figure 2a–b). The majority of participants (81%) reported obtaining information about their preterm medical history through discussions with parents and caregivers, whereas 19% reported obtaining information from their medical records (figure 2c).
FIGURE 2.
Awareness among EMPOWER participants regarding a) gestational age and b) birthweight. c) Sources of perinatal history information; participants could select more than one source. d) Willingness to access their medical file among the 243 participants who reported not currently having access to their medical records.
Of the 243 respondents who did not yet have access to their medical records, 35% do not want to have access, while 60% expressed a desire to obtain such access; 19% had formally requested access, 10% had attempted but discontinued their efforts and 31% indicated that they would like to obtain access but had not yet attempted to do so (figure 2d).
More than half of the participants (58%) reported receiving at least one type of intensive care at birth, while 14% did not and 28% did not know or remember. Assisted ventilation was the most reported special care received, followed by complementary feeding. Overall, 67% of the participants stayed in an incubator or in a special care unit, and it lasted more than a month for 17% of them. As expected, participants born very to extremely preterm were more likely to have stayed in an incubator and to have received assisted ventilation and complementary feeding (table 2).
TABLE 2.
Types of neonatal intensive care received by EMPOWER participants, categorised by gestational age
| Intensive care received during the neonatal period | All participants N=301# | Extremely or very preterm born (<32 weeks) N=115 |
Moderate or late preterm born (≥32–37 weeks) N=147 |
|---|---|---|---|
| Incubator stay, n (%) | |||
| <2 weeks | 60 (20%) | 19 (16.5%) | 34 (23%) |
| ≥2 weeks–1 month | 51 (17%) | 21 (18%) | 27 (18%) |
| >1 month | 52 (17%) | 41 (35.6%) | 10 (7%) |
| Incubator, but do not know the length | 39 (13%) | 21 (18%) | 14 (10%) |
| No incubator | 52 (17%) | 6 (5%) | 35 (24%) |
| Do not know | 47 (16%) | 7 (6%) | 27 (18%) |
| Types of special care received during the neonatal period, n (%) | |||
| Assisted ventilation | 104 (35%) | 60 (52%) | 40 (27%) |
| Nutritional support | 71 (24%) | 41 (35.5%) | 30 (20%) |
| Treatment of jaundice | 58 (19%) | 22 (19%) | 34 (23%) |
| Surgery | 9 (3%) | 6 (5%) | 1 (0.7%) |
| Other | 20 (7%) | 8 (7%) | 10 (7%) |
| None | 41 (14%) | 6 (5%) | 27 (18%) |
#: Gestational age group information was available from n=262 (87%) of the participants.
Participants’ interactions with healthcare professionals throughout their care journey
Over half of participants (54%) considered their preterm status to be relevant to the management of chronic respiratory conditions. Nonetheless, 59% did not disclose their neonatal history to the physician managing their asthma or COPD (figure 3a). Disclosure occurred spontaneously in 24% of cases and following the physician's inquiry in 11%. Discussions about the perinatal history occurred most commonly during consultations for chronic or acute respiratory conditions (figure 3b).
FIGURE 3.
a) EMPOWER participants who shared their preterm status and b) context in which the information was shared. c) Healthcare professional (HCP) reactions when perinatal history was discussed and d) aspects of the perinatal history inquired by HCPs.
When informed of participants’ preterm status, physicians explained its relevance as a risk factor (40%), its implications for management in (20%) and requested additional information (19%) (figure 3c). Healthcare professionals most frequently inquired about birthweight, neonatal treatments and parental smoking, and less often about BPD, bronchiolitis and need for oxygen (figure 3d). Notably, no physician reaction was reported in 31% of cases.
45% of participants reported having been monitored during childhood due to their preterm status (figure 4a). However, monitoring was infrequently continued after childhood (figure 4b).
FIGURE 4.
a) Childhood follow-up of EMPOWER participants. b) Follow-up after childhood among those who reported receiving follow-up during childhood.
Discussion
The EMPOWER survey is the first study to capture the perspectives of adults born preterm who were later diagnosed with chronic respiratory diseases. Results show that awareness is high; almost 90% of participants knew their birthweight and gestational age, and two-thirds recalled aspects of the special care they received. However, this knowledge was rarely integrated into their current care. Nearly 60% reported never discussing their neonatal history with the physician managing their respiratory condition. Notably, 80% of participants reported learning about their preterm history from parents or caregivers, and just 19% from their medical files.
Preterm birth disrupts lung development, increasing the risk of future impaired lung function, asthma-like symptoms and adult-onset COPD [7, 12, 19, 21]. Nationwide registry data from Finland and Norway show that individuals born before 32 weeks’ gestation have a 2–3-fold higher risk of developing obstructive airway disease in adulthood, while those born at 32–38 weeks face a 1.1–1.5-fold increased risk compared with term-born peers [19]. The risk is even greater for those born extremely preterm (<28 weeks), reporting an odds ratio of 7.44 for developing COPD between ages 30 and 50 years [19].
Consequently, preterm birth has been incorporated as a risk factor for future obstructive respiratory disease into major international medical societies’ recommendations, such Global Initiative for Asthma and the Global Initiative for Chronic Obstructive Lung Disease (GOLD) [23, 24], which now recognise preterm birth as a risk factor for developing airflow limitation. The 2025 GOLD guidelines specifically advise taking a history of early-life events, including prematurity and low birth weight, when assessing patients with suspected or confirmed COPD [23]. In practice, however, this recommendation is not yet widely implemented. The EMPOWER survey shows that only 35% of participants had ever discussed their neonatal history with the physician managing their adult respiratory disease. In just 10% of cases, this history was elicited by the physician. Similarly, the PRE-TELL survey has recently reported that only 21% of the surveyed adult pulmonologists declared taking a perinatal history of their patients, revealing a gap in the transmission of neonatal information of preterm-born individuals who transition to adult respiratory care [22]. Despite growing evidence linking premature birth to an increased risk of future respiratory disease [19, 25], the limited awareness among adult respiratory physicians appears to be a persistent gap. The proportion of physicians who routinely obtain a perinatal history in EMPOWER and Pre-TELL surveys has not improved over time, mirroring findings from a 2012 British Thoracic Society survey, in which only 20% of respiratory consultants reported inquiring about early-life risk factors to their patients [26]. Until high-level recommendations from medical societies are fully translated into routine practice, preterm-born individuals should be empowered to discuss their preterm medical history with the physicians managing their respiratory disease to ensure they receive the best respiratory care.
In the EMPOWER survey, over 80% of participants reported knowing their gestational age and birthweight, and many were aware of the type of intensive care they received. These findings highlight the crucial role of parents and caregivers in the continuum of care for preterm-born individuals. As the primary source of information, they should be provided with accurate, transferable and accessible information to ensure effective communication of neonatal history to both their children and the physicians managing preterm-born individuals from childhood into adulthood. Beyond the medical dimension, this information can help parents and caregivers in discussions with schoolteachers and other educators about potential challenges their children may face in education and daily life, such as limitations in sports, learning or other activities [27, 28].
On the other hand, only 20% of EMPOWER participants obtained their neonatal information from medical records. Among those without access, 60% reported either wanting access, having already requested it or having tried in the past but given up on the attempt. This last group highlights potential barriers to retrieving medical history. Moving forward, streamlined access to electronic medical files for preterm-born individuals, their parents and caregivers, general practitioners, and respiratory physicians could facilitate the transfer of neonatal information along the respiratory care journey. Such records should, at a minimum, include gestational age, birthweight, diagnosis of BPD (yes/no), duration of invasive mechanical ventilation and oxygen therapy, parental smoking status, and other relevant aspects of the perinatal history.
Less than half of EMPOWER participants were followed during childhood, and only 20% of these continued to be followed into adulthood. Seppänen et al. [29] examined follow-up practices for children born very preterm (<32 weeks) in 11 European countries up to 2022, revealing marked heterogeneity. Programmes typically lasted 2–5 years and primarily focused on motor and neurodevelopmental outcomes, with none incorporating respiratory assessments. The European Respiratory Society and the American Thoracic Society have issued guidelines with conditional recommendations based on low-strength evidence [30, 31]. However, the former focuses exclusively on BPD survivors, while the latter is limited to the follow-up of children and adolescents with respiratory symptoms. Although these guidelines provide an essential starting point, they remain incomplete, as they do not address the respiratory follow-up of individuals born at moderate and late preterm gestational ages. While this group carries a lower overall risk of obstructive respiratory disease, it represents >80% of all preterm births [32], comprising a substantial group vulnerable to respiratory disease in adulthood. Consequently, the development of an international consensus on how to structure long-term respiratory follow-up of preterm-born individuals remains an unmet need. Recently, the treatable traits strategy has been proposed as a new approach for the management of preterm born individuals across the life span [33, 34].
The EMPOWER survey underscores several weakness/limitations in the continuum of care for preterm-born individuals with respiratory disease, including limited awareness among clinicians of the link between prematurity and later respiratory disease, poor transmission of neonatal medical history, and the absence of structured follow-up. Additional challenges include the lack of evidence-based treatment strategies for this population and the absence of reliable biomarkers to identify which preterm infants, particularly those born moderate or late preterm, will eventually develop respiratory diseases. Nevertheless, systematic identification of preterm-born adults with new-onset obstructive respiratory disease, coupled with lifelong structured follow-up, could improve understanding of disease aetiology, enable treatment optimisation and help characterise this population [35–39]. Such efforts may also stimulate research leading to novel therapeutic strategies.
The present study has several limitations that must be acknowledged. As a survey relying on retrospective questioning, recall bias cannot be excluded. Selection bias may have influenced the survey results, as recruitment through advocacy groups likely captured a highly engaged subset of preterm-born adults. These individuals are more aware of their neonatal history and more inclined to complete the survey. Consequently, the findings may overestimate awareness of long-term respiratory risks and may not be fully generalisable to the broader preterm population. The survey was administered to preterm-born adults with physician-diagnosed respiratory disease. However, this should not be interpreted as evidence that asthma or COPD in this population is solely attributable to prematurity. Many participants of EMPOWER reported having comorbidities that could share a syndemic origin [40]. Lastly, the mean age of respondents was 55 years, with 75% being over 40 years old. Therefore, many were born before the widespread introduction of surfactant therapy and noninvasive ventilation. These advances have improved survival and extended viability to 22–23 weeks’ gestation but have also likely increased the incidence of BPD. Consequently, preterm-born individuals now entering young adulthood may present with a different, potentially more severe, phenotype of obstructive respiratory disease than the EMPOWER population.
Conclusion
The EMPOWER survey reveals that while most preterm-born adults with obstructive respiratory disease are aware of key aspects of their neonatal history, this information is rarely integrated into their respiratory care. This gap likely reflects limited awareness among both physicians and patients, as most participants had never raised the topic and only 10% reported being asked about early-life events by their physician. In addition, the absence of structured long-term follow-up for preterm-born individuals with respiratory disease further disrupts continuity of care. These findings underscore the need for standardised strategies to ensure the lifelong transmission of perinatal medical history, the systematic inclusion of early life events in adult respiratory assessments and the development of long-term follow-up programmes for this population.
Acknowledgements
The authors acknowledge the contributions of Cynthia Lesbros, Emilie Pain and Valentine Ficara from Carenity for their expert technical assistance with the EMPOWER survey.
Footnotes
Provenance: Submitted article, peer reviewed.
Ethics statement: The study documents (protocol and patient materials) were approved by the WCG investigator's Institutional Review Board.
Artificial intelligence-based models (Grammarly Pro and ChatGPT 5.2) were used as a basic writing assistant, supporting the authors in refining and correcting the manuscript.
Conflict of interests: F. Bianco, L. Costa and U. Scaffidi-Argentina are employees of Chiesi Farmaceutici. L. Ingledow reports no conflicts of interest. S. Mader has not received any personal honoraria or fees related to the EMPOWER study; the Global Foundation for the Care of Newborn Infants received financial contributions from Chiesi to support the questionnaire dissemination and participation in the project's Advisory Board. X. Murgia served as a consultant for Chiesi Farmaceutici in relation to the EMPOWER study. A. Lavizzari reports consultancy activities with Chiesi Farmaceutici, Vyaire Medical, ZOLL and Getinge. D. Stolz reports personal fees from Chiesi Farmaceutici related to this manuscript, and personal fees for lectures and/or advisory board participation from AstraZeneca AG, Sanofi, Novartis AG, GSK AG, Roche AG, Chiesi Farmaceutici S.p.A., Boehringer Ingelheim, Insmed, Pfizer and Vifor AG, outside the submitted work. A. Papi declares payments to his institution from Chiesi, AstraZeneca, GSK and Sanofi; consultancy fees from Chiesi, AstraZeneca, GSK, Sanofi/Regeneron, Iqvia, Avillion, Moderna and Zentiva; and payment or honoraria for lectures, presentations and speakers’ bureaus from Chiesi, AstraZeneca, GSK, Zambon, Sanofi, Regeneron and Avillion. A. Agustí reports grants from AstraZeneca, GSK and Menarini; honoraria for lectures from AstraZeneca, Chiesi, Cipla, GSK, Glenmark, Kamada, Menarini, Roche, Sanofi and Zambon; and participation on scientific advisory boards for AstraZeneca, Chiesi, GSK and Menarini. E. Baraldi reports personal fees from Chiesi Farmaceutici for lectures and/or advisory board participation, as well as personal fees from Sanofi, AstraZeneca and MSD, outside the submitted work.
Support statement: The study was funded by Chiesi Farmaceutici S.p.A. The company employees contributed to the study design, data analysis, interpretation and manuscript writing. Funding information for this article has been deposited with the Open Funder Registry.
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00195-2026.SUPPLEMENT
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