PDF(Pubmed)
Abstract：
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.
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.
摘要：
背景：早产是一个全球性的健康问题。其不利后果可能贯穿一生，给家庭带来潜在的沉重负担，卫生系统,和社会。在高收入国家,第一批受益于改善护理的儿童现在是进入中年的成年人。然而,关于早产个体的长期结局的知识存在明显差距.
目的：本研究旨在评估招募和跟进全球早产成人电子队列的可行性，并提供参与评估，参与者的特点，问题的可接受性，以及收集的数据质量。
方法：我们实施了一个前瞻性的，打开,观察,和国际电子队列试点研究(成年人早产健康-电子队列试点研究[HAPP-e])。纳入标准是成年人（年龄≥18岁），出生早产（妊娠<37周），有互联网接入和电子邮件地址，并了解至少1种可用语言。一个大的，多方面,并建立了多语言交流战略。在2019年12月至2021年6月之间，使用安全的网络平台进行了包含和重复数据收集。我们提供了有关参与电子队列的描述性统计数据，即,在平台上注册的人数，签署了同意书，发起并完成基线问卷，并发起并完成了后续调查问卷。我们还描述了HAPP-e参与者的主要特征，并对数据质量和敏感问题的可接受性进行了评估。
结果：截至2020年12月31日，共有1004人在平台上注册，导致527个帐户，其中包含已确认的电子邮件和333个已签署的同意书。总共333名参与者发起了基线问卷。所有参与者都被邀请采取后续行动，35.7%(119/333)同意参加，其中97.5%(116/119)发起了随访问卷。基线（296/333，88.9%）和随访（112/116，96.6%）的完成率都非常高。这个来自34个国家/地区的早产成年人样本涵盖了广泛的社会人口统计学和健康特征。出生时的胎龄范围为23+6至36+6周（中位数32，IQR29-35周）。只有2.1％（7/333）的参与者以前参加过早产个体的队列。女性（252/333，75.7％）和受过高等教育的参与者（235/327，71.9％）的比例也偏高。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，因为很少有参与者选择了“我不想说”选项。
结论：尽管我们确定了具体程序的改进空间，这项试点研究证实了在全球范围内招募大量不同的早产成年人样本的巨大潜力，从而推进对成人早产的研究。
目的：本研究旨在评估招募和跟进全球早产成人电子队列的可行性，并提供参与评估，参与者的特点，问题的可接受性，以及收集的数据质量。
方法：我们实施了一个前瞻性的，打开,观察,和国际电子队列试点研究(成年人早产健康-电子队列试点研究[HAPP-e])。纳入标准是成年人（年龄≥18岁），出生早产（妊娠<37周），有互联网接入和电子邮件地址，并了解至少1种可用语言。一个大的，多方面,并建立了多语言交流战略。在2019年12月至2021年6月之间，使用安全的网络平台进行了包含和重复数据收集。我们提供了有关参与电子队列的描述性统计数据，即,在平台上注册的人数，签署了同意书，发起并完成基线问卷，并发起并完成了后续调查问卷。我们还描述了HAPP-e参与者的主要特征，并对数据质量和敏感问题的可接受性进行了评估。
结果：截至2020年12月31日，共有1004人在平台上注册，导致527个帐户，其中包含已确认的电子邮件和333个已签署的同意书。总共333名参与者发起了基线问卷。所有参与者都被邀请采取后续行动，35.7%(119/333)同意参加，其中97.5%(116/119)发起了随访问卷。基线（296/333，88.9%）和随访（112/116，96.6%）的完成率都非常高。这个来自34个国家/地区的早产成年人样本涵盖了广泛的社会人口统计学和健康特征。出生时的胎龄范围为23+6至36+6周（中位数32，IQR29-35周）。只有2.1％（7/333）的参与者以前参加过早产个体的队列。女性（252/333，75.7％）和受过高等教育的参与者（235/327，71.9％）的比例也偏高。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，因为很少有参与者选择了“我不想说”选项。
结论：尽管我们确定了具体程序的改进空间，这项试点研究证实了在全球范围内招募大量不同的早产成年人样本的巨大潜力，从而推进对成人早产的研究。
