Development of Nationwide Recommendations to Support Prenatal Counseling in Extreme Prematurity

Rosa Geurtzen, Arno F. J. van Heijst, Jos M. T. Draaisma, Lindie J. M. K. Kuijpers, Mallory Woiski, Hubertina C. J. Scheepers, Anton H. van Kaam, Martijn A. Oudijk, Harrie N. Lafeber, Caroline J. Bax, Jan F. Koper, Leonie K. Duin, Marc A. van der Hoeven, René F. Kornelisse, Johannes J. Duvekot, Peter Andriessen, Pieter J. van Runnard Heimel, Marja van der Heide-Jalving, Mireille N. Bekker, Susanne M. Mulder-de Tollenaer & 5 others Jim van Eyck, Ellis Eshuis-Peters, Margo Graatsma, Rosella P. M. G. Hermens, Marije Hogeveen

Research output: Contribution to journalArticleAcademicpeer-review

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.
Original languageEnglish
JournalPediatrics
Volume143
Issue number6
DOIs
Publication statusPublished - 2019

Cite this

Geurtzen, R., van Heijst, A. F. J., Draaisma, J. M. T., Kuijpers, L. J. M. K., Woiski, M., Scheepers, H. C. J., ... Hogeveen, M. (2019). Development of Nationwide Recommendations to Support Prenatal Counseling in Extreme Prematurity. Pediatrics, 143(6). https://doi.org/10.1542/peds.2018-3253
Geurtzen, Rosa ; van Heijst, Arno F. J. ; Draaisma, Jos M. T. ; Kuijpers, Lindie J. M. K. ; Woiski, Mallory ; Scheepers, Hubertina C. J. ; van Kaam, Anton H. ; Oudijk, Martijn A. ; Lafeber, Harrie N. ; Bax, Caroline J. ; Koper, Jan F. ; Duin, Leonie K. ; van der Hoeven, Marc A. ; Kornelisse, René F. ; Duvekot, Johannes J. ; Andriessen, Peter ; van Runnard Heimel, Pieter J. ; van der Heide-Jalving, Marja ; Bekker, Mireille N. ; Mulder-de Tollenaer, Susanne M. ; van Eyck, Jim ; Eshuis-Peters, Ellis ; Graatsma, Margo ; Hermens, Rosella P. M. G. ; Hogeveen, Marije. / Development of Nationwide Recommendations to Support Prenatal Counseling in Extreme Prematurity. In: Pediatrics. 2019 ; Vol. 143, No. 6.
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title = "Development of Nationwide Recommendations to Support Prenatal Counseling in Extreme Prematurity",
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.",
author = "Rosa Geurtzen and {van Heijst}, {Arno F. J.} and Draaisma, {Jos M. T.} and Kuijpers, {Lindie J. M. K.} and Mallory Woiski and Scheepers, {Hubertina C. J.} and {van Kaam}, {Anton H.} and Oudijk, {Martijn A.} and Lafeber, {Harrie N.} and Bax, {Caroline J.} and Koper, {Jan F.} and Duin, {Leonie K.} and {van der Hoeven}, {Marc A.} and Kornelisse, {Ren{\'e} F.} and Duvekot, {Johannes J.} and Peter Andriessen and {van Runnard Heimel}, {Pieter J.} and {van der Heide-Jalving}, Marja and Bekker, {Mireille N.} and {Mulder-de Tollenaer}, {Susanne M.} and {van Eyck}, Jim and Ellis Eshuis-Peters and Margo Graatsma and Hermens, {Rosella P. M. G.} and Marije Hogeveen",
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doi = "10.1542/peds.2018-3253",
language = "English",
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publisher = "American Academy of Pediatrics",
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Geurtzen, R, van Heijst, AFJ, Draaisma, JMT, Kuijpers, LJMK, Woiski, M, Scheepers, HCJ, van Kaam, AH, Oudijk, MA, Lafeber, HN, Bax, CJ, Koper, JF, Duin, LK, van der Hoeven, MA, Kornelisse, RF, Duvekot, JJ, Andriessen, P, van Runnard Heimel, PJ, van der Heide-Jalving, M, Bekker, MN, Mulder-de Tollenaer, SM, van Eyck, J, Eshuis-Peters, E, Graatsma, M, Hermens, RPMG & Hogeveen, M 2019, 'Development of Nationwide Recommendations to Support Prenatal Counseling in Extreme Prematurity' Pediatrics, vol. 143, no. 6. https://doi.org/10.1542/peds.2018-3253

Development of Nationwide Recommendations to Support Prenatal Counseling in Extreme Prematurity. / Geurtzen, Rosa; van Heijst, Arno F. J.; Draaisma, Jos M. T.; Kuijpers, Lindie J. M. K.; Woiski, Mallory; Scheepers, Hubertina C. J.; van Kaam, Anton H.; Oudijk, Martijn A.; Lafeber, Harrie N.; Bax, Caroline J.; Koper, Jan F.; Duin, Leonie K.; van der Hoeven, Marc A.; Kornelisse, René F.; Duvekot, Johannes J.; Andriessen, Peter; van Runnard Heimel, Pieter J.; van der Heide-Jalving, Marja; Bekker, Mireille N.; Mulder-de Tollenaer, Susanne M.; van Eyck, Jim; Eshuis-Peters, Ellis; Graatsma, Margo; Hermens, Rosella P. M. G.; Hogeveen, Marije.

In: Pediatrics, Vol. 143, No. 6, 2019.

Research output: Contribution to journalArticleAcademicpeer-review

TY - JOUR

T1 - Development of Nationwide Recommendations to Support Prenatal Counseling in Extreme Prematurity

AU - Geurtzen, Rosa

AU - van Heijst, Arno F. J.

AU - Draaisma, Jos M. T.

AU - Kuijpers, Lindie J. M. K.

AU - Woiski, Mallory

AU - Scheepers, Hubertina C. J.

AU - van Kaam, Anton H.

AU - Oudijk, Martijn A.

AU - Lafeber, Harrie N.

AU - Bax, Caroline J.

AU - Koper, Jan F.

AU - Duin, Leonie K.

AU - van der Hoeven, Marc A.

AU - Kornelisse, René F.

AU - Duvekot, Johannes J.

AU - Andriessen, Peter

AU - van Runnard Heimel, Pieter J.

AU - van der Heide-Jalving, Marja

AU - Bekker, Mireille N.

AU - Mulder-de Tollenaer, Susanne M.

AU - van Eyck, Jim

AU - Eshuis-Peters, Ellis

AU - Graatsma, Margo

AU - Hermens, Rosella P. M. G.

AU - Hogeveen, Marije

PY - 2019

Y1 - 2019

N2 - 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.

AB - 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.

UR - https://www.scopus.com/inward/record.uri?partnerID=HzOxMe3b&scp=85067203973&origin=inward

UR - https://www.ncbi.nlm.nih.gov/pubmed/31160512

U2 - 10.1542/peds.2018-3253

DO - 10.1542/peds.2018-3253

M3 - Article

VL - 143

JO - Pediatrics

JF - Pediatrics

SN - 0031-4005

IS - 6

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Geurtzen R, van Heijst AFJ, Draaisma JMT, Kuijpers LJMK, Woiski M, Scheepers HCJ et al. Development of Nationwide Recommendations to Support Prenatal Counseling in Extreme Prematurity. Pediatrics. 2019;143(6). https://doi.org/10.1542/peds.2018-3253