Using Digital Tools to Study the Health of Adults Born Preterm at a Large Scale: e-Cohort Pilot Study

Sandra Marques, Elsa Lorthe, Carolina Santos, José Pedro Ornelas, Julia Nadine Doetsch, Raquel Mara Teixeira, Ana Cristina Santos, Carina Rodrigues, Gonçalo Gonçalves, Pedro Ferreira Sousa, João Correia Lopes, Artur Rocha, Henrique Barros

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Background: 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.
Objective: 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.
Methods: 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 (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.
Results: 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.
Conclusions: 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.
Original languageEnglish
Article numbere39854
Pages (from-to)1-18
Number of pages18
JournalJournal of Medical Internet Research
Publication statusPublished - 15 May 2023


  • E-cohort
  • Prematurity
  • Preterm birth
  • Life course epidemiology
  • Participant involvement
  • Citizen science
  • Research on European Children and Adults born Preterm
  • RECAP Preterm
  • Premature
  • Preterm
  • Cohort study
  • Epidemiology
  • Observational study
  • Global health
  • Global burden
  • Survey
  • Questionnaire
  • Health outcomes
  • Mobile phone


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