Advocating for lifelong follow‐up after preterm birth

Girard‐Bock, Camille; Janvier, Annie; Nuyt, Anne Monique; Luu, Thuy Mai

doi:10.1111/apa.16004

Cited by 3 publications

(1 citation statement)

References 11 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…Indeed, many people do not know their gestational age at birth. Moreover, because being born preterm is not considered a chronic condition yet, most adults born preterm are unaware of the potential long-term consequences and the need for research in this area [ 26 ]. This is probably an explanation for the existence of very few organizations of patients, contrary to the associations of parents of preterm babies, which exist in many countries and are federated at an international level.…”

Section: Discussionmentioning

confidence: 99%

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

Lorthe¹,

Santos²,

Ornelas³

et al. 2023

J Med Internet Res

View full text Add to dashboard Cite

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 (<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. 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.

show abstract

Section: Discussionmentioning

confidence: 99%

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

Lorthe¹,

Santos²,

Ornelas³

et al. 2023

J Med Internet Res

View full text Add to dashboard Cite

show abstract

Impact of prematurity on lifelong cardiovascular health: structural and functional considerations

Sixtus,

Dyson,

Gray

2024

npj Cardiovasc Health

View full text Add to dashboard Cite

The aetiology of preterm cardiovascular disease formation appears different from that of traditional population. Within the ‘traditional’ population cardiovascular disease formation is driven by functional stressors (e.g., diet, smoking). Whereas preterm cardiovascular disease risk is driven by structural changes incurred at birth. Much of the proliferative growth in the developing heart and major vessels ceases at birth, leading to permanently reduced dimensions compared to their term-born cohort. These structural changes take a back seat to functional and clinical complications within the neonatal period, but become increasingly pronounced from adolescence, at which point functional decompensation can be observed. While the cause may differ from ‘traditional’ populations, the eventual disease outcomes do not, leading them to be an overlooked population. This means that aetiology, and thus, treatment options may be very different due to the underlying mechanisms. Here, we propose that the structural cause of preterm-associated cardiovascular disease is apparent and observable early in life. Understanding the differences in cardiovascular disease aetiology may therefore aid in the early treatment of preterm-associated cardiovascular disease risk.

show abstract

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

Lorthe¹,

Santos²,

Ornelas³

et al. 2022

Preprint

View full text Add to dashboard Cite

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 (<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. 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. CLINICALTRIAL

show abstract

Advocating for lifelong follow‐up after preterm birth

Cited by 3 publications

References 11 publications

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

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

Impact of prematurity on lifelong cardiovascular health: structural and functional considerations

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

Contact Info

Product

Resources

About