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Using Digital Tools to Study the Health of Adults Born Preterm at a Large Scale

2023-05-15Artigo científico Acesso aberto
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dc.contributor.authorLorthe, Elsa
dc.contributor.authorSantos, Carolina
dc.contributor.authorOrnelas, José Pedro
dc.contributor.authorDoetsch, Julia Nadine
dc.contributor.authorMarques, Sandra
dc.contributor.authorTeixeira, Raquel Mara
dc.contributor.authorSantos, Ana Cristina
dc.contributor.authorRodrigues, Carina
dc.contributor.authorGonçalves, Gonçalo
dc.contributor.authorFerreira Sousa, Pedro
dc.contributor.authorCorreia Lopes, João
dc.contributor.authorRocha, Artur
dc.contributor.authorBarros, Henrique
dc.contributor.institutionInstituto de Comunicação da NOVA (ICNOVA)
dc.contributor.pblJMIR Publications
dc.date.accessioned2023-05-19T22:10:51Z
dc.date.available2023-05-19T22:10:51Z
dc.date.issued2023-05-15
dc.descriptionUIDB/05021/2020 UIDP/05021/2020
dc.description.abstractBackground: 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.en
dc.description.versionpublishersversion
dc.description.versionpublished
dc.format.extent18
dc.format.extent489145
dc.identifier.doi10.2196/39854
dc.identifier.otherPURE: 60259278
dc.identifier.otherPURE UUID: bad0784a-d1a4-4a55-9859-4dccb0b5fe28
dc.identifier.otherORCID: /0000-0003-4169-2624/work/151389555
dc.identifier.otherScopus: 85159733636
dc.identifier.otherPubMed: 37184902
dc.identifier.urihttp://hdl.handle.net/10362/152970
dc.identifier.urlhttps://www.scopus.com/pages/publications/85159733636
dc.identifier.urlhttps://www.jmir.org/2023/1/e39854/
dc.language.isoeng
dc.peerreviewedyes
dc.relationinfo:eu-repo/grantAgreement/FCT/6817 - DCRRNI ID/UIDB%2F05021%2F2020/PT
dc.relationNOVA Institute of Communication
dc.relationNOVA Institute of Communication
dc.subjectE-cohort
dc.subjectPrematurity
dc.subjectPreterm birth
dc.subjectLife course epidemiology
dc.subjectParticipant involvement
dc.subjectCitizen science
dc.subjectResearch on European Children and Adults born Preterm
dc.subjectRECAP Preterm
dc.subjectPremature
dc.subjectPreterm
dc.subjectCohort study
dc.subjectEpidemiology
dc.subjectObservational study
dc.subjectGlobal health
dc.subjectGlobal burden
dc.subjectSurvey
dc.subjectQuestionnaire
dc.subjectHealth outcomes
dc.subjectMobile phone
dc.subjectSDG 3 - Good Health and Well-being
dc.titleUsing Digital Tools to Study the Health of Adults Born Preterm at a Large Scaleen
dc.title.subtitlee-Cohort Pilot Studyen
dc.typejournal article
degois.publication.firstPage1
degois.publication.lastPage18
degois.publication.titleJournal of Medical Internet Research
degois.publication.volume25
dspace.entity.typePublication
oaire.awardNumberUIDB/05021/2020
oaire.awardNumberUIDP/05021/2020
oaire.awardTitleNOVA Institute of Communication
oaire.awardTitleNOVA Institute of Communication
oaire.awardURIinfo:eu-repo/grantAgreement/FCT/6817 - DCRRNI ID/UIDB%2F05021%2F2020/PT
oaire.awardURIinfo:eu-repo/grantAgreement/FCT/6817 - DCRRNI ID/UIDP%2F05021%2F2020/PT
oaire.fundingStream6817 - DCRRNI ID
oaire.fundingStream6817 - DCRRNI ID
project.funder.identifierhttp://doi.org/10.13039/501100001871
project.funder.identifierhttp://doi.org/10.13039/501100001871
project.funder.nameFundação para a Ciência e a Tecnologia
project.funder.nameFundação para a Ciência e a Tecnologia
rcaap.rightsopenAccess
relation.isProjectOfPublication644a17ef-9379-4935-b15f-e1f0f30f3a09
relation.isProjectOfPublication0b5e5093-06ac-4c4e-8679-f447a078f103
relation.isProjectOfPublication.latestForDiscovery644a17ef-9379-4935-b15f-e1f0f30f3a09

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