University of Oulu

Sandra CS. Marques, Julia Nadine Doetsch, Raquel Teixeira, Georgia Abate, Anne Brødsgaard, Ann-Mari Brubakk, Grazia Colombo, Marina Cuttini, Kari Anne I. Evensen, Vicky Hennissen, Marit S. Indredavik, Eero Kajantie, Jo Lebeer, Sylvia van der Pal, Pernille Pedersen, Iemke Sarrechia, Eeva Virtanen, Henrique Barros, Increased interaction and procedural flexibility favoured participation: Study across European cohorts of preterm born individuals, Journal of Clinical Epidemiology, Volume 143, 2022, Pages 169-177, ISSN 0895-4356,

Increased interaction and procedural flexibility favoured participation : study across European cohorts of preterm born individuals

Saved in:
Author: Marques, Sandra CS.1,2,3; Doetsch, Julia Nadine1,3; Teixeira, Raquel1,3;
Organizations: 1EPIUnit, Instituto de Saúde Pública da Universidade do Porto, Rua das Taipas 135, Porto, 4050-091 , Portugal
2Centro em Rede de Investigação em Antropologia (CRIA), Instituto Universitário de Lisboa, Lisbon, Portugal
3Laboratório para a Investigação Integrativa e Translacional em Saúde Populacional (ITR), Porto, Portugal
4Clinical Care and Management Innovation Research Area, Bambino Gesù Children's Hospital, IRCCS, Rome, Italy
5Department of Paediatrics and Adolescent Medicine, Copenhagen University Hospital Amager Hvidovre, Hvidovre, Denmark
6Department of Public Health, Faculty of Health Sciences, Aarhus University, Denmark
7Department of Clinical and Molecular Medicine, NTNU – Norwegian University of Science and Technology, Norway
8Unit for Physiotherapy Services, Trondheim Municipality, Norway
9Department of Physiotherapy, Oslo Metropolitan University, Norway
10Department FAMPOP Family Medicine & Population Health, Faculty of Medicine & Health Sciences University of Antwerp, Belgium
11Population Health Unit, Finnish Institute for Health and Welfare, Helsinki and Oulu, Finland
12PEDEGO Research Unit, MRC Oulu, Oulu University Hospital and University of Oulu, Finland
13Children's Hospital, Helsinki University Hospital and University of Helsinki, Finland
14Nederlandse Organisatie voor toegepast Natuurwetenschappelijk Onderzoek (TNO), TNO Child Health, the Hague, the Netherlands
15Departamento de Ciências da Saúde Pública e Forenses e Educação Médica, Faculdade de Medicina, Universidade do Porto (FMUP), Porto, Portugal
Format: article
Version: accepted version
Access: open
Online Access: PDF Full Text (PDF, 0.2 MB)
Persistent link:
Language: English
Published: Elsevier, 2022
Publish Date: 2022-12-28


Objective: To understand participation and attrition phenomena variability in European cohorts of individuals born preterm through in-depth exploration of the interplay of situational elements involved.

Methods: Multi-situated qualitative design, using focus groups, semi-structured interviews and collaborative visual methodology with a purposive sample of adults born preterm, parents and professionals (n = 124) from eight cohorts in seven European countries.

Results: Most cohort participants were motivated by altruism/solidarity and gratitude/sense of duty to reciprocate (only absent in adults aged 19–21), followed by expectation of direct benefit to one’s health and knowledge amongst participating adults. Common deterrents were perceived failure in reciprocity as in insufficient/inadequate interaction and information sharing, and postal questionnaires. Combining multipurpose, flexible strategies for contact and assessment, reminders, face-to-face and shorter periodicity and not simply adding retention strategies or financial incentives favoured participation. Professionals’ main challenges entailed resources, funding and, European societal changes related to communication and geopolitical environment.

Conclusions: Retention would benefit from tailoring inclusive strategies throughout the cohorts’ life cycle and consistent promotion of reciprocal altruistic research goals. Investing in regular interaction, flexibility in procedures, participant involvement and return of results can help mitigate attrition as well as considering mothers as main facilitators to participating children and impaired adults.

see all

Series: Journal of clinical epidemiology
ISSN: 0895-4356
ISSN-E: 1878-5921
ISSN-L: 0895-4356
Volume: 143
Pages: 169 - 177
DOI: 10.1016/j.jclinepi.2021.12.027
Type of Publication: A1 Journal article – refereed
Field of Science: 3123 Gynaecology and paediatrics
Funding: This study is part of the RECAP preterm project funded by the European Union's Horizon 2020 research and innovation programme under grant agreement No 733280. This study is funded by FEDER funds through the Operational Program for Competitiveness and Internationalization, and by national funds of FCT – Fundação para a Ciência e Tecnologia, the Unidade de Investigação em Epidemiologia (EPIUnit) - Instituto de Saúde Pública da Universidade do Porto (ISPUP) (UIDB/04750/2020).
Copyright information: © 2021 Elsevier Inc. This manuscript version is made available under the CC-BY-NC-ND 4.0 license