JMIR Publications

ABSTRACT

Background:

Preterm birth is a global health issue. Its adverse consequences may continue 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 knowledge regarding long-term outcomes of individuals born preterm.

Objective:

Taking advantage of e-epidemiology tools, we aimed to (1) assess the feasibility of recruiting and following up an e-cohort of adults born preterm, worldwide, and (2) provide estimations of participation, characteristics of participants, acceptability of questions and quality of data collected.

Methods:

We implemented a prospective, open, observational and international e-cohort pilot study (HAPP-e “Health of Adult People born Preterm – an e-cohort pilot study”). Inclusion criteria included being an adult (18+ years old), born preterm (<37 weeks of gestation), having Internet access and an email address, and understanding at least one of the available languages. A large multi-faceted and multi-lingual communication strategy was set up. Between December 2019 and June 2021, inclusion and repeated data collection were performed through a secured web-platform. We provide descriptive statistics regarding participation in the e-cohort, namely the number of persons who registered on the platform, signed the consent form, initiated and/or completed the baseline questionnaire and initiated and/or completed the follow-up questionnaire. We also describe the main characteristics of the HAPP-e participants and provide an assessment of the quality of data and the acceptability of sensitive questions.

Results:

As of December 31, 2020, 1004 persons had registered on the platform, leading to 527 accounts with a confirmed email, and 333 signed consent forms. All 333 participants initiated the baseline questionnaire. These 333 participants were invited to follow-up, 35% (117/333) consented to participate, of whom 94% (110/117) initiated the follow-up questionnaire. Completion rates among those who started responding to the questionnaires was very high both at baseline (89%, 296/333) and at follow-up (97%, 107/110). This sample of adults born preterm born in 34 countries covered a wide range of socio-demographic and health characteristics. Gestational age at birth ranged from 23+6 to 36+6 weeks (median 32 weeks, interquartile range 29-35). Only 2.1% had previously participated in a cohort of individuals born preterm. Women (75.7%) and highly educated participants (75.9%) were over-represented. Good quality data was collected thanks to validation controls implemented into the web-platform (e.g., no missing data in completed modules). The acceptability of potentially sensitive questions was excellent, as very few participants chose the “I prefer not to say” option when available.

Conclusions:

Although we identified room for improvement in specific procedures, this pilot study confirmed great potential for recruiting a large and diverse sample of adults born preterm worldwide, thereby advancing research on adults born preterm.