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Are guidelines needed? International perspectives on decision-making and practice variation in the care of extremely preterm infants

Journal of Perinatology (2026)Cite this article

Subjects

Abstract

Objective

To examine international perspectives on the necessity of guidelines for the care of extremely preterm infants (EPIs), what forms such guidance should take, and the extent of practice variation neonatologists find acceptable.

Study design

Anonymous, online, cross-sectional international survey among neonatologists, exploring current and preferred guidelines and hypothetical scenarios testing acceptance of practice variation in EPI decision-making.

Results

We analyzed 127 responses from 47 countries. Most respondents (55%) preferred a guideline using gestational age (GA) alongside other prognostic factors; 13% preferred no guideline. In scenarios involving borderline viability, variation was accepted when based on parental wishes, cultural norms, or resource constraints, but not when reflecting hospitals or individual differences. Views on directive counseling were divided.

Conclusions

Neonatologists support flexible, structured guidelines that consider more than GA alone. Variation is acceptable when reflecting parental values, cultural norms, or resource constraints but not when driven by individual or institutional preferences.

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Fig. 1: GA boundaries of the grey zone—below which only palliative comfort care is offered and above which NICU treatment is initiated by default—assuming GA as the primary guiding criterion.

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Data availability

an anonymized dataset will be made available upon request to the corresponding author.

References

  1. Gallagher K, Martin J, Keller M, Marlow N. European variation in decision-making and parental involvement during preterm birth. Arch Dis Child Fetal Neonatal Ed. 2014;99:F245–249.

    Article  PubMed  Google Scholar 

  2. Guillen U, Weiss EM, Munson D, Maton P, Jefferies A, Norman M, et al. Guidelines for the Management of Extremely Premature Deliveries: A Systematic Review. Pediatrics. 2015;136:343–50.

    Article  PubMed  Google Scholar 

  3. Getaneh T, Homaira N, Kasaye H, Tapawan SJC, Chughtai AA, Lui K. Global inequities in the survival of extremely preterm infants: a systematic review and meta-analysis. BMC Pediatr. 2025;25:579.

    Article  PubMed  PubMed Central  Google Scholar 

  4. Krick JA, Feltman DM. Neonatologists’ preferences regarding guidelines for periviable deliveries: do we really know what we want?. J Perinatol. 2019;39:445–52.

    Article  PubMed  Google Scholar 

  5. Geurtzen R, Draaisma J, Hermens R, Scheepers H, Woiski M, van Heijst A, et al. Perinatal practice in extreme premature delivery: variation in Dutch physicians’ preferences despite guideline. Eur J Pediatr. 2016;175:1039–46.

    Article  PubMed  PubMed Central  Google Scholar 

  6. Rent S, Bakari A, Aynalem Haimanot S, Deribessa SJ, Plange-Rhule G, Bockarie Y, et al. Perspectives on Resuscitation Decisions at the Margin of Viability among Specialist Newborn Care Providers in Ghana and Ethiopia: A Qualitative Analysis. BMC Pediatr. 2022;22:97.

    Article  PubMed  PubMed Central  Google Scholar 

  7. Di Stefano LM, Wood K, Mactier H, Bates SE, Wilkinson D. Viability and thresholds for treatment of extremely preterm infants: survey of UK neonatal professionals. Arch Dis Child Fetal Neonatal Ed. 2021;106:596–602.

    Article  PubMed  PubMed Central  Google Scholar 

  8. Wood K, Di Stefano LM, Mactier H, Bates SE, Wilkinson D. Individualised decision making: interpretation of risk for extremely preterm infants-a survey of UK neonatal professionals. Arch Dis Child Fetal Neonatal Ed. 2022;107:281–8.

    Article  PubMed  Google Scholar 

  9. Verweij EJ, De Proost L, Hogeveen M, Reiss IKM, Verhagen AAE, Geurtzen R. Dutch guidelines on care for extremely premature infants: Navigating between personalisation and standardization. Semin Perinatol. 2022;46:151532.

    Article  PubMed  CAS  Google Scholar 

  10. Wilkinson DJ. Gestational ageism. Arch Pediatr Adolesc Med. 2012;166:567–72.

    Article  PubMed  Google Scholar 

  11. Mactier H, Bates SE, Johnston T, Lee-Davey C, Marlow N, Mulley K, et al. Perinatal management of extreme preterm birth before 27 weeks of gestation: a framework for practice. Arch Dis Child Fetal Neonatal Ed. 2020;105:232–9.

    Article  PubMed  Google Scholar 

  12. De Proost L, Ismaili M’hamdi H, Verhagen A, Reiss I, Geurtzen R, Verweij EJJ. On the limits of viability: toward an individualized prognosis-based approach. J Perinatol. 2020;40:1736–8.

    Article  PubMed  Google Scholar 

  13. Dupont-Thibodeau A, Barrington KJ, Farlow B, Janvier A. End-of-life decisions for extremely low-gestational-age infants: why simple rules for complicated decisions should be avoided. Semin Perinatol. 2014;38:31–37.

    Article  PubMed  Google Scholar 

  14. Knight B, Brereton A, Powell RJ, Liversedge H. Assessing the accuracy of ultrasound estimation of gestational age during routine antenatal care in in vitro fertilization (IVF) pregnancies. Ultrasound. 2018;26:49–53.

    Article  PubMed  PubMed Central  Google Scholar 

  15. Wilkinson D, Verhagen E, Johansson S. Thresholds for Resuscitation of Extremely Preterm Infants in the UK, Sweden, and Netherlands. Pediatrics. 2018;142:S574–S584.

    Article  PubMed  PubMed Central  Google Scholar 

  16. Williams N, Synnes A, O’Brien C, Albersheim S. An alternative approach to developing guidelines for the management of an anticipated extremely preterm infant. J Perinat Med. 2020;48:751–6.

    Article  PubMed  Google Scholar 

  17. Lemyre B, Daboval T, Dunn S, Kekewich M, Jones G, Wang D, et al. Shared decision making for infants born at the threshold of viability: a prognosis-based guideline. J Perinatol. 2016;36:503–9.

    Article  PubMed  CAS  Google Scholar 

  18. Batton D. Resuscitation of extremely low gestational age infants: an advisory committee’s dilemmas. Acta Paediatr. 2010;99:810–1.

    Article  PubMed  Google Scholar 

  19. Smith LK, Blondel B, Van Reempts P, Draper ES, Manktelow BN, Barros H, et al. Variability in the management and outcomes of extremely preterm births across five European countries: a population-based cohort study. Arch Dis Child Fetal Neonatal Ed. 2017;102:F400–F408.

    Article  PubMed  Google Scholar 

  20. Rysavy MA, Li L, Bell EF, Das A, Hintz SR, Stoll BJ, et al. Between-hospital variation in treatment and outcomes in extremely preterm infants. N Engl J Med. 2015;372:1801–11.

    Article  PubMed  PubMed Central  Google Scholar 

  21. de Boer A, van Beek PE, Andriessen P, Groenendaal F, Hogeveen M, Meijer JS, et al. Opportunities and Challenges of Prognostic Models for Extremely Preterm Infants. Children 2023;10:1712.

  22. Wilkinson D Who should decide for critically ill neonates and how? The grey zone in neonatal treatment decisions. In: McDougall R, Delany C, Gillam L (eds). When Doctors and Parents Disagree: Ethics, Paediatrics & the Zone of Parental Discretion. The Federation Press: Sydney (AU), 2016.

  23. Seri I, Evans J. Limits of viability: definition of the gray zone. J Perinatol. 2008;28:S4–8.

    Article  PubMed  Google Scholar 

  24. de Boer A, de Vries M, Berken DJ, van Dam H, Verweij EJ, Hogeveen M, et al. A scoping review of parental values during prenatal decisions about treatment options after extremely premature birth. Acta Paediatr. 2023;112:911–8.

    Article  PubMed  Google Scholar 

  25. Kim BH, Krick J, Schneider S, Montes A, Anani UE, Murray PD, et al. How do Clinicians View the Process of Shared Decision-Making with Parents Facing Extremely Early Deliveries? Results from an Online Survey. Am J Perinatol. 2024;41:713–21.

    Article  PubMed  Google Scholar 

  26. Kukora SK, Boss RD. Values-based shared decision-making in the antenatal period. Semin Fetal Neonatal Med. 2018;23:17–24.

    Article  PubMed  Google Scholar 

  27. Janvier A, Barrington KJ, Aziz K, Bancalari E, Batton D, Bellieni C, et al. CPS position statement for prenatal counselling before a premature birth: Simple rules for complicated decisions. Paediatr Child Health. 2014;19:22–24.

    PubMed  PubMed Central  Google Scholar 

  28. Mercurio MR, Carter BS. Resuscitation policies for extremely preterm newborns: finally moving beyond gestational age. J Perinatol. 2020;40:1731–3.

    Article  PubMed  Google Scholar 

  29. Meadow W, Lantos J. Moral reflections on neonatal intensive care. Pediatrics. 2009;123:595–7.

    Article  PubMed  Google Scholar 

  30. Janvier A, Leblanc I, Barrington KJ. Nobody likes premies: the relative value of patients’ lives. J Perinatol. 2008;28:821–6.

    Article  PubMed  CAS  Google Scholar 

  31. Laventhal N, Verhagen AAE, Hansen TWR, Dempsey E, Davis PG, Musante GA, et al. International variations in application of the best-interest standard across the age spectrum. J Perinatol. 2017;37:208–13.

    Article  PubMed  CAS  Google Scholar 

  32. Cavolo A, Dierckx de Casterle B, Naulaers G, Gastmans C. Physicians’ Attitudes on Resuscitation of Extremely Premature Infants: A Systematic Review. Pediatrics 2019,143:e20183972.

  33. Arbour K, Lindsay E, Laventhal N, Myers P, Andrews B, Klar A, et al. Shifting Provider Attitudes and Institutional Resources Surrounding Resuscitation at the Limit of Gestational Viability. Am J Perinatol. 2022;39:869–77.

    Article  PubMed  Google Scholar 

  34. Kukora S, Laventhal N. Resident Attitudes on Ethical and Medical Decision-Making for Neonates at the Limit of Viability. Am J Perinatol. 2016;33:449–55.

    PubMed  Google Scholar 

  35. Hayden D, Villanueva-Uy ME, Mendoza MK, Wilkinson D. Resuscitation of preterm infants in the Philippines: a national survey of resources and practice. Arch Dis Child Fetal Neonatal Ed. 2020;105:209–14.

    Article  PubMed  Google Scholar 

  36. De Proost L, Verweij EJ, Geurtzen R, Zuijdwegt G, Verhagen E, Ismaili M’hamdi H. Viability, abortion and extreme prematurity: a critique. Clin Ethics. 2023;18:385–92.

    Article  Google Scholar 

  37. Kim S, Savage TA, Hershberger PE, Kavanaugh K. End-of-Life Care in Neonatal Intensive Care Units from an Asian Perspective: An Integrative Review of the Research Literature. J Palliat Med. 2019;22:848–57.

    Article  PubMed  Google Scholar 

  38. Miljeteig I, Sayeed SA, Jesani A, Johansson KA, Norheim OF. Impact of ethics and economics on end-of-life decisions in an Indian neonatal unit. Pediatrics. 2009;124:e322–328.

    Article  PubMed  Google Scholar 

  39. Charafeddine L, Ammous F, Kayle M, Arawi T. Survival at the threshold of viability: a nationwide survey of the opinions and attitudes of physicians in a developing country. Paediatr Perinat Epidemiol. 2014;28:227–34.

    Article  PubMed  Google Scholar 

  40. Wilkinson D, Hayden D. In Search of Consistency: Scandinavian Approaches to Resuscitation of Extremely Preterm Infants. Pediatrics. 2018;142:S603–S606.

    Article  PubMed  PubMed Central  Google Scholar 

  41. Harrison MS, Goldenberg RL. Global burden of prematurity. Semin Fetal Neonatal Med. 2016;21:74–79.

    Article  PubMed  Google Scholar 

  42. Lawn JE, Blencowe H, Oza S, You D, Lee AC, Waiswa P, et al. Every Newborn: progress, priorities, and potential beyond survival. Lancet. 2014;384:189–205.

    Article  PubMed  Google Scholar 

  43. Janvier A, Barrington KJ, Payot A. A time for hope: guidelines for the perinatal management of extremely preterm birth. Arch Dis Child Fetal Neonatal Ed. 2020;105:230–1.

    Article  PubMed  Google Scholar 

  44. Kwok TC, Fiolna M, Jones N, Walker K, Sharkey D. Association of gestational day with antenatal management and the mortality and respiratory outcomes of extremely preterm infants. Arch Dis Child Fetal Neonatal Ed. 2025;110:415–21.

    Article  PubMed  Google Scholar 

  45. Backes CH, Soderstrom F, Agren J, Sindelar R, Bartlett CW, Rivera BK, et al. Outcomes following a comprehensive versus a selective approach for infants born at 22 weeks of gestation. J Perinatol. 2019;39:39–47.

    Article  PubMed  Google Scholar 

  46. Hakansson S, Farooqi A, Holmgren PA, Serenius F, Hogberg U. Proactive management promotes outcome in extremely preterm infants: a population-based comparison of two perinatal management strategies. Pediatrics. 2004;114:58–64.

    Article  PubMed  Google Scholar 

  47. Wilkinson DJ, Villanueva-Uy ME, Hayden D, McTavish J; PSNbM Consensus Working Group. Decision-making around resuscitation of extremely preterm infants in the Philippines: A consensus guideline. J Paediatr Child Health. 2019;55:1023–8.

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Acknowledgements

Juliette Cruijsberg (Radboudumc Nijmegen) helped with building the survey in the survey-software. We thank the ESPR (European Society of Pediatric Research) especially Pascal Fentsch for their support in this research by spreading the survey as well as ESPR’s Special Interest Group Sub 25/40 Preterm Infants. Special thanks to Irwin Reiss (Neonatology, University Medical Center Hamburg-Eppendorf, Germany and ErasmusMC Rotterdam, Nijmegen) for supporting and spreading this survey.

Author information

Authors and Affiliations

  1. Division of Neonatology, Department of Pediatrics, Amalia Children’s Hospital, Nijmegen, Radboud University Medical Centre, Nijmegen, The Netherlands

    Rosa Geurtzen, Simone Klijntjes, Maureen Stegeman & Marije Hogeveen

  2. Department of Pediatrics, University Medical Centre Groningen, University of Groningen, Groningen, The Netherlands

    A. A. E. Eduard Verhagen

  3. Department of Medical Ethics, Leiden University Medical Centre, Leiden, The Netherlands

    Lien De Proost

  4. Faculty of Health and Life Sciences, University of Bristol, Bristol, UK

    Charles C. Roehr

  5. National Perinatal Epidemiology Unit, Oxford Population Health, University of Oxford, Oxford, UK

    Charles C. Roehr

  6. Department of Obstetrics and Gynecology, Leiden University Medical Centre, Leiden, The Netherlands

    E. J. Joanne Verweij

  7. Department of Neonatology, Mayanei Hayeshua Medical Centre, Bnei Brak, Israel

    Bernard Barzilay

Authors
  1. Rosa Geurtzen
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  2. Simone Klijntjes
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  8. E. J. Joanne Verweij
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  9. Bernard Barzilay
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Contributions

RG, EJV and BB conceptualized this study and developed the survey based on a Dutch survey. MH, AAE and LdP provided feedback on the survey. CCR supported the survey and study design. RG, MH, AAE, LdP, CCR, EJV and BB helped spreading the survey. RG, SK, and MS analyzed the results, SK and MS helped writing the result section. RG, EJV and BB interpret the study results. RG wrote the first draft manuscript. All authors critically revised the manuscript and approved the definitive version.

Corresponding author

Correspondence to Rosa Geurtzen.

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Geurtzen, R., Klijntjes, S., Stegeman, M. et al. Are guidelines needed? International perspectives on decision-making and practice variation in the care of extremely preterm infants. J Perinatol (2026). https://doi.org/10.1038/s41372-026-02581-5

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