Variation in follow-up for children born very preterm in Europe
Anna‐Veera Seppänen, Henrique Barros, Elizabeth S. Draper, Stavros Petrou, Lazaros Andronis, Sung Wook Kim, Rolf F. Maier, Pernille Pedersen, Janusz Gadzinowski, Véronique Pierrat, Iemke Sarrechia, Jo Lebeer, Ulrika Ådén, Liis Toome, Nicole Thiele, Arno van Heijst, Marina Cuttini, Jennifer Zeitlin, Jo Lebeer, Iemke Sarrechia, Patrick Van Reempts, Els Bruneel, Eva Cloet, Ann Oostra, Els Ortibus, Klaus Boerch, Pernille Pedersen, Liis Toome, Heili Varendi, Mairi Männamaa, Pierre‐Yves Ancel, A. Burguet, P.‐H. Jarreau, Véronique Pierrat, Alexandra Nuytten, Rolf F. Maier, Michael Zemlin, B. Misselwitz, L. Wohlers, Marina Cuttini, Ileana Croci, Virgilio Carnielli, Gina Ancora, G Faldella, Fabrizio Ferrari, Arno van Heijst, C. Koopman-Esseboom, Janusz Gadzinowski, Jan Mazela, A. Montgomery, T. Pikuła, Henrique Barros, Raquel Costa, Carina Rodrigues, U Aden, Elizabeth S. Draper, Alan Fenton, Samantha Johnson, Silke Mader, Nicole Thiele, Stavros Petrou, S W Kim, Lazaros Andronis, Jennifer Zeitlin, Adrien M. Aubert, Camille Bonnet, Rym El Rafei, Anna‐Veera Seppänen
Abstract
BACKGROUND: Children born very preterm (<32 weeks of gestation) face high risks of neurodevelopmental and health difficulties compared with children born at term. Follow-up after discharge from the neonatal intensive care unit is essential to ensure early detection and intervention, but data on policy approaches are sparse. METHODS: We investigated the characteristics of follow-up policy and programmes in 11 European countries from 2011 to 2022 using healthcare informant questionnaires and the published/grey literature. We further explored how one aspect of follow-up, its recommended duration, may be reflected in the percent of parents reporting that their children are receiving follow-up services at 5 years of age in these countries using data from an area-based cohort of very preterm births in 2011/12 (N = 3635). RESULTS: Between 2011/12 and 22, the number of countries with follow-up policies or programmes increased from 6 to 11. The policies and programmes were heterogeneous in eligibility criteria, duration and content. In countries that recommended longer follow-up, parent-reported follow-up rates at 5 years of age were higher, especially among the highest risk children, born <28 weeks' gestation or with birthweight <1000 g: between 42.1% and 70.1%, vs. <20% in most countries without recommendations. CONCLUSIONS: Large variations exist in follow-up policies and programmes for children born very preterm in Europe; differences in recommended duration translate into cross-country disparities in reported follow-up at 5 years of age.