EPIUnit - Instituto de Saúde Pública, Universidade do Porto, Porto, Portugal.
Laboratório para a Investigação Integrativa e Translacional em Saúde Populacional (ITR), Porto, Portugal.
J Med Internet Res. 2023 May 15;25:e39854. doi: 10.2196/39854.
Preterm birth is a global health concern. Its adverse consequences may persist throughout the life course, exerting a potentially heavy burden on families, health systems, and societies. In high-income countries, the first children who benefited from improved care are now adults entering middle age. However, there is a clear gap in the knowledge regarding the long-term outcomes of individuals born preterm.
This study aimed to assess the feasibility of recruiting and following up an e-cohort of adults born preterm worldwide and provide estimations of participation, characteristics of participants, the acceptability of questions, and the quality of data collected.
We implemented a prospective, open, observational, and international e-cohort pilot study (Health of Adult People Born Preterm-an e-Cohort Pilot Study [HAPP-e]). Inclusion criteria were being an adult (aged ≥18 years), born preterm (<37 weeks of gestation), having internet access and an email address, and understanding at least 1 of the available languages. A large, multifaceted, and multilingual communication strategy was established. Between December 2019 and June 2021, inclusion and repeated data collection were performed using a secured web platform. We provided descriptive statistics regarding participation in the e-cohort, namely, the number of persons who registered on the platform, signed the consent form, initiated and completed the baseline questionnaire, and initiated and completed the follow-up questionnaire. We also described the main characteristics of the HAPP-e participants and provided an assessment of the quality of the data and the acceptability of sensitive questions.
As of December 31, 2020, a total of 1004 persons had registered on the platform, leading to 527 accounts with a confirmed email and 333 signed consent forms. A total of 333 participants initiated the baseline questionnaire. All participants were invited to follow-up, and 35.7% (119/333) consented to participate, of whom 97.5% (116/119) initiated the follow-up questionnaire. Completion rates were very high both at baseline (296/333, 88.9%) and at follow-up (112/116, 96.6%). This sample of adults born preterm in 34 countries covered a wide range of sociodemographic and health characteristics. The gestational age at birth ranged from 23+6 to 36+6 weeks (median 32, IQR 29-35 weeks). Only 2.1% (7/333) of the participants had previously participated in a cohort of individuals born preterm. Women (252/333, 75.7%) and highly educated participants (235/327, 71.9%) were also overrepresented. Good quality data were collected thanks to validation controls implemented on the web platform. The acceptability of potentially sensitive questions was excellent, as very few participants chose the "I prefer not to say" option when available.
Although we identified room for improvement in specific procedures, this pilot study confirmed the great potential for recruiting a large and diverse sample of adults born preterm worldwide, thereby advancing research on adults born preterm.
早产是一个全球性的健康问题。其不良后果可能会持续整个生命过程，给家庭、医疗体系和社会带来潜在的沉重负担。在高收入国家，第一批受益于改善护理的初生婴儿现已进入中年。然而，人们对于早产儿的长期结局的认识仍存在明显差距。
本研究旨在评估在全球范围内招募和随访早产儿成年人电子队列的可行性，并提供参与率、参与者特征、问题可接受性以及所收集数据质量的估计。
我们实施了一项前瞻性、开放、观察性和国际电子队列研究（健康的成年人出生前早产儿-电子队列研究[HAPP-e]）。纳入标准为：成年人（年龄≥18 岁）、早产儿（<37 周妊娠）、有互联网接入和电子邮件地址，且至少懂一种可用语言。我们制定了一项大型、多方面和多语言的沟通策略。在 2019 年 12 月至 2021 年 6 月期间，通过一个安全的网络平台进行纳入和重复数据收集。我们对电子队列的参与情况进行了描述性统计，即登记平台的人数、签署同意书、启动和完成基线问卷以及启动和完成随访问卷的人数。我们还描述了 HAPP-e 参与者的主要特征，并评估了数据质量和敏感问题的可接受性。
截至 2020 年 12 月 31 日，共有 1004 人在平台上注册，其中 527 人确认了电子邮件地址，333 人签署了同意书。共有 333 名参与者启动了基线问卷。所有参与者都被邀请参加随访，其中 35.7%（119/333）同意参与，其中 97.5%（116/119）启动了随访问卷。在基线（296/333，88.9%）和随访（112/116，96.6%）时，完成率都非常高。来自 34 个国家的这些早产儿成年人样本涵盖了广泛的社会人口学和健康特征。出生时的胎龄范围为 23+6 周至 36+6 周（中位数 32，IQR 29-35 周）。只有 2.1%（7/333）的参与者之前曾参加过早产儿队列研究。女性（252/333，75.7%）和高学历者（235/327，71.9%）也占比较大。由于在网络平台上实施了验证控制，因此收集了高质量的数据。潜在敏感问题的可接受性非常好，因为在可用时，很少有参与者选择“我宁愿不说”选项。
尽管我们在特定程序中发现了改进的空间，但这项试点研究证实了在全球范围内招募大量且多样化的早产儿成年人样本的巨大潜力，从而推进了对早产儿成年人的研究。
