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There is consistent evidence that preterm birth is associated with a higher risk of adverse long-term sequelae. (1,2) Overall, the earlier a baby is born (i.e. at lower gestation), and the more impaired the fetal growth during pregnancy, the less developed the organs are and the higher the risk for long-term disability. There is consensus that those born very preterm (<32 weeks gestation) or with severe neonatal complications are at high risk. (3) Therefore, the target groups for the standards developed in this topic expert group are the following:
- Infants born before 32+0 weeks’ gestation or
- Infants born after 32+0 gestation and has or had one or more significant risk factors such as:
- a brain lesion on neuroimaging likely to be associated with developmental problems or disorders (for example, grade 3 or 4 intraventricular haemorrhage or cystic periventricular leukomalacia)
- grade 2 or 3 hypoxic ischaemic encephalopathy in the neonatal period
- neonatal bacterial or viral meningitis/encephalitis
- severe foetal growth restriction
- known severe social or family problems with issues safety for the child.
Targeted structured follow-up systems and continuing care for this vulnerable patient group, starting in the neonatal unit with discharge management and support during the transition period from hospital to home is thus recommended. (4)
Care programmes for high-risk infants may involve a range of professionals and disciplines. (5) Growth, feeding, general health, visual, hearing, and speech difficulties, as well as cognitive, behavioral and motor development are addressed in all infants, and interventions, such as family-centered developmental support or physiotherapy, (preverbal) speech therapy, dietetics, occupational therapy, or psychological support are advised if appropriate. (6–8) Multidisciplinary collaboration and coordination of care between professionals in different healthcare settings is necessary to prevent families falling through gaps in care and to avoid needless treatment duplication. (9–11) Additionally, assessment of mental health should be included in the follow-up programme, as both, infants born very preterm and their parents are at increased risk for mental health problems. (12,13) Also the risk for developing late-life “cardiometabolic disease” is likely to be increased in children and adults born very preterm, which makes counselling on healthy lifestyle necessary. (14)
Case managers are recommended to provide coordination and continuity of care and treatment goals, and facilitate access to appropriate resources. (15) The focus of care changes over time from medical problems, feeding and growth, to psychological development and educational issues such as behavior and emotions, interaction with peers and siblings as well as schooling and transition into school.
The Topic Expert Group on Follow-up and continuing care outlines standards for the care and treatment of high-risk babies and children after discharge from hospital and defines central areas of assessments to timely identify problems, and thereby enable appropriate interventions and optimal management of healthcare needs, aiming to improve outcome into adult life.
- Keller M, Saugstad OD, van Steenbrugge G, Mader S, Thiele N. Caring for Tomorrow. EFCNI White Paper on Maternal and Newborn Health and Aftercare Services [Internet]. European Foundation for the Care of Newborn Infants (EFCNI); 2011. Available from: www.efcni.org/wp-content/uploads/2018/03/EFCNI_WP_01-26-12FIN.pdf
- Johnson S, Wolke D. Prematurity and low birthweight. In: Hopkins B, Geangu E, Linkenauger S, editors. The Cambridge Encyclopedia of Child Development [Internet]. 2nd ed. Cambridge University Press; 2017 [cited 2018 Nov 22]. p. 705–16. Available from: https://www.cambridge.org/core/product/identifier/9781316216491%23CN-bp-101/type/book_part
- Platt MJ. Outcomes in preterm infants. Public Health. 2014 May;128(5):399–403.
- Denizot S, Fleury J, Caillaux G, Rouger V, Rozé J-C, Gras-Le Guen C. Hospital initiation of a vaccinal schedule improves the long-term vaccinal coverage of ex-preterm children. Vaccine. 2011 Jan 10;29(3):382–6.
- Doyle LW, Anderson PJ, Battin M, Bowen JR, Brown N, Callanan C, et al. Long term follow up of high risk children: who, why and how? BMC Pediatr. 2014 Nov 17;14:279.
- LaHood A, Bryant C. Outpatient Care of the Premature Infant. Am Fam Physician. 2007 Oct 15;76(8):1159–64.
- National Perinatal Association. Multidisciplinary Guidelines for the Care of Late Preterm Infants. [Internet]. Lonedell, MO; [cited 2017 Mar 5]. Available from: http://www.nationalperinatal.org/Resources/LatePretermGuidelinesNPA.pdf
- NICE guideline. Developmental follow-up of children and young people born preterm (NG 72) [Internet]. National Institute for Health and Clinical Excellence; 2017. Available from: https://www.nice.org.uk/guidance/ng72
- Law J, McCann D, O’May F. Managing change in the care of children with complex needs: healthcare providers’ perspectives. J Adv Nurs. 2011 Dec;67(12):2551–60.
- Woods S, Riley P. A role for community health care providers in neonatal follow-up. Paediatr Child Health. 2006 May;11(5):301–2.
- Moyer VA, Singh H, Finkel KL, Giardino AP. Transitions from neonatal intensive care unit to ambulatory care: description and evaluation of the proactive risk assessment process. Qual Saf Health Care. 2010 Oct;19 Suppl 3:i26-30.
- Lindström K, Lindblad F, Hjern A. Psychiatric morbidity in adolescents and young adults born preterm: a Swedish national cohort study. Pediatrics. 2009 Jan;123(1):e47-53.
- Ionio C, Colombo C, Brazzoduro V, Mascheroni E, Confalonieri E, Castoldi F, et al. Mothers and fathers in NICU: The impact of preterm birth on parental distress. Eur J Psychol. 2016 Nov 18;12(4):604–21.
- Parkinson JRC, Hyde MJ, Gale C, Santhakumaran S, Modi N. Preterm birth and the metabolic syndrome in adult life: a systematic review and meta-analysis. Pediatrics. 2013 Apr;131(4):e1240-1263.
- Sauve R, Lee SK. Neonatal follow-up programs and follow-up studies: Historical and current perspectives. Paediatr Child Health. 2006 May;11(5):267–70.
Standards at a glance