Variation in follow-up for children born very preterm in Europe

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.

Figure 1

Overall unadjusted and adjusted^a proportions^b of parent-reported follow-up and reported follow-up by perinatal risk defined by GA and BW for children born <32 weeks’ gestation in follow-up at 5 years of age by country.^cNotes:^aAdjusted for GA, SGA, BPD, IVH grades III–IV, cPVL, ROP stages III–V, NEC requiring surgery any congenital anomaly, child sex, multiple birth, maternal educational level, maternal age at delivery, maternal country of birth and parity. ^bAll proportions have been estimated using inverse probability weights. ^cSample sizes: Portugal (Lisbon and Northern region): 254/425; Belgium (Flanders): 114/259; the Netherlands (Central and Eastern region): 58/146; France (Burgundy, Ile-de-France and the Northern region): 246/770; Sweden (greater Stockholm): 40/141; Denmark (Eastern Region): 43/151; the UK (East Midlands, Northern, Yorkshire and the Humber regions): 64/419; Germany (Hesse and Saarland): 37/266; Italy (Emilia-Romagna, Lazio and Marche): 93/691; Estonia (entire country): 17/133; Poland (Wielkopolska): 21/186.