Rosa Geurtzen1, Arno F J van Heijst2, Jos M T Draaisma2, Lindie J M K Kuijpers2, Mallory Woiski3, Hubertina C J Scheepers4, Anton H van Kaam5, Martijn A Oudijk6, Harrie N Lafeber7, Caroline J Bax8, Jan F Koper7, Leonie K Duin9, Marc A van der Hoeven10, René F Kornelisse11, Johannes J Duvekot12, Peter Andriessen7, Pieter J van Runnard Heimel13, Marja van der Heide-Jalving7, Mireille N Bekker14, Susanne M Mulder-de Tollenaer7, Jim van Eyck15, Ellis Eshuis-Peters16, Margo Graatsma17, Rosella P M G Hermens18, Marije Hogeveen2. 1. Departments of Neonatology and Pediatrics and rosa.geurtzen@radboudumc.nl. 2. Departments of Neonatology and Pediatrics and. 3. Obstetrics and Gynecology, Amalia Children's Hospital and. 4. Departments of Obstetrics and Gynecology and. 5. Department of Neonatology, Emma Children's Hospital and. 6. Department of Obstetrics and Gynecology, Amsterdam University Medical Center and University of Amsterdam, Amsterdam, Netherlands. 7. Departments of Neonatology and. 8. Obstetrics and Gynecology, Vrije Universteit Medical Center and Vrije Universteit Amsterdam, Amsterdam, Netherlands. 9. Obstetrics, Gynecology, and Prenatal Diagnosis, University Medical Center Groningen and University of Groningen, Groningen, Netherlands. 10. Neonatology, Maastricht University Medical Center+, Maastricht, Netherlands. 11. Department of Neonatology, Sophia Children's Hospital and. 12. Department of Obstetrics and Gynecology, Erasmus University Medical Center, Rotterdam, Netherlands. 13. Obstetrics and Gynecology, Máxima Medical Centre, Veldhoven, Netherlands. 14. Obstetrics and Gynecology, Wilhelmina Children's Hospital, University Medical Centre, Utrecht, Netherlands. 15. Obstetrics and Gynecology, Isala Woman and Children's Hospital Zwolle, Zwolle, Netherlands; and. 16. Neonatology, Department of Pediatrics, Leiden University Medical Center, Leiden, Netherlands. 17. Divisions of Obstetrics and Gynecology and. 18. Scientific Institute for Quality of Care, Radboud Institute for Health Sciences, Radboud University Medical Center, Nijmegen, Netherlands.
Abstract
OBJECTIVES: To develop a nationwide, evidence-based framework to support prenatal counseling in extreme prematurity, focusing on organization, decision-making, content, and style aspects. METHODS: A nationwide multicenter RAND-modified Delphi method study was performed between November 2016 and December 2017 in the Netherlands. Firstly, recommendations were extracted from literature and previous studies. Secondly, an expert panel (n = 21) with experienced parents, obstetricians, and neonatologists rated the recommendations on importance for inclusion in the framework. Thirdly, ratings were discussed in a consensus meeting. The final set of recommendations was approved and transformed into a framework. RESULTS: A total of 101 recommendations on organization, decision-making, content, and style were included in the framework, including tools to support personalization. The most important recommendations regarding organization were to have both parents involved in the counseling with both the neonatologist and obstetrician. The shared decision-making model was recommended for deciding between active support and comfort care. Main recommendations regarding content of conversation were explanation of treatment options, information on survival, risk of permanent consequences, impossibility to predict an individual course, possibility for multiple future decision moments, and a discussion on parental values and standards. It was considered important to avoid jargon, check understanding, and provide a summary. The expert panel, patient organization, and national professional associations (gynecology and pediatrics) approved the framework. CONCLUSIONS: A nationwide, evidence-based framework for prenatal counseling in extreme prematurity was developed. It contains recommendations and tools for personalization in the domains of organization, decision-making, content, and style of prenatal counseling.
OBJECTIVES: To develop a nationwide, evidence-based framework to support prenatal counseling in extreme prematurity, focusing on organization, decision-making, content, and style aspects. METHODS: A nationwide multicenter RAND-modified Delphi method study was performed between November 2016 and December 2017 in the Netherlands. Firstly, recommendations were extracted from literature and previous studies. Secondly, an expert panel (n = 21) with experienced parents, obstetricians, and neonatologists rated the recommendations on importance for inclusion in the framework. Thirdly, ratings were discussed in a consensus meeting. The final set of recommendations was approved and transformed into a framework. RESULTS: A total of 101 recommendations on organization, decision-making, content, and style were included in the framework, including tools to support personalization. The most important recommendations regarding organization were to have both parents involved in the counseling with both the neonatologist and obstetrician. The shared decision-making model was recommended for deciding between active support and comfort care. Main recommendations regarding content of conversation were explanation of treatment options, information on survival, risk of permanent consequences, impossibility to predict an individual course, possibility for multiple future decision moments, and a discussion on parental values and standards. It was considered important to avoid jargon, check understanding, and provide a summary. The expert panel, patient organization, and national professional associations (gynecology and pediatrics) approved the framework. CONCLUSIONS: A nationwide, evidence-based framework for prenatal counseling in extreme prematurity was developed. It contains recommendations and tools for personalization in the domains of organization, decision-making, content, and style of prenatal counseling.
Authors: Josephus F M van den Heuvel; Marije Hogeveen; Margo Lutke Holzik; Arno F J van Heijst; Mireille N Bekker; Rosa Geurtzen Journal: BMC Med Inform Decis Mak Date: 2022-01-06 Impact factor: 2.796
Authors: Ilse H Zaal-Schuller; Rosa Geurtzen; Dick L Willems; Mirjam A de Vos; Marije Hogeveen Journal: Acta Paediatr Date: 2022-01-31 Impact factor: 4.056