Digital decision aid for prenatal counseling in imminent extreme premature labor: development and pilot testing

被引:8
作者
van den Heuvel, Josephus F. M. [1 ]
Hogeveen, Marije [2 ]
Lutke Holzik, Margo [3 ]
van Heijst, Arno F. J. [2 ]
Bekker, Mireille N. [1 ]
Geurtzen, Rosa [2 ]
机构
[1] Univ Med Ctr Utrecht, Wilhelminas Children Hosp, Dept Obstet, Utrecht, Netherlands
[2] Radboud Univ Nijmegen Med Ctr, Amalia Childrens Hosp, Dept Neonatol, Internal Code 804,POB 9101, NL-6500 HB Nijmegen, Netherlands
[3] Leiden Univ Med Ctr, Dept Obstet, Leiden, Netherlands
关键词
Digital health; Neonatology; Obstetrics; Patient decision aid; IPDAS; Shared decision making; Prematurity; VIABILITY; PARENTS; RESUSCITATION; VALUES; LIMITS; CARE; PROFESSIONALS; PREFERENCES; ETHICS;
D O I
10.1186/s12911-021-01735-z
中图分类号
R-058 [];
学科分类号
摘要
Background In case of extreme premature delivery at 24 weeks of gestation, both early intensive care and palliative comfort care for the neonate are considered treatment options. Prenatal counseling, preferably using shared decision making, is needed to agree on the treatment option in case labor progresses. This article described the development of a digital decision aid (DA) to support pregnant women, partners and clinicians in prenatal counseling for imminent extreme premature labor. Methods This DA is developed following the International Patient Decision Aid Standards. The Dutch treatment guideline and the Dutch recommendations for prenatal counseling in extreme prematurity were used as basis. Development of the first prototype was done by expert clinicians and patients, further improvements were done after alpha testing with involved clinicians, patients and other experts (n = 12), and beta testing with non-involved clinicians and patients (n = 15). Results The final version includes information, probabilities and figures depending on users' preferences. Furthermore, it elicits patient values and provides guidance to aid parents and professionals in making a decision for either early intensive care or palliative comfort care in threatening extreme premature delivery. Conclusion A decision aid was developed to support prenatal counseling regarding the decision on early intensive care versus palliative comfort care in case of extreme premature delivery at 24 weeks gestation. It was well accepted by parents and healthcare professionals. Our multimedia, digital DA is openly available online to support prenatal counseling and personalized, shared decision-making in imminent extreme premature labor.
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页数:9
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共 38 条
  • [11] Values clarification: Eliciting the values that inform and influence parents' treatment decisions for periviable birth
    Edmonds, Brownsyne Tucker
    Hoffman, Shelley M.
    Laitano, Tatiana
    Bhamidipalli, Surya Sruthi
    Jeffries, Erin
    Fadel, William
    Kavanaugh, Karen
    [J]. PAEDIATRIC AND PERINATAL EPIDEMIOLOGY, 2020, 34 (05) : 556 - 564
  • [12] Clarifying values: an updated review
    Fagerlin, Angela
    Pignone, Michael
    Abhyankar, Purva
    Col, Nananda
    Feldman-Stewart, Deb
    Gavaruzzi, Teresa
    Kryworuchko, Jennifer
    Levin, Carrie A.
    Pieterse, Arwen H.
    Reyna, Valerie
    Stiggelbout, Anne
    Scherer, Laura D.
    Wills, Celia
    Witteman, Holly O.
    [J]. BMC MEDICAL INFORMATICS AND DECISION MAKING, 2013, 13
  • [13] The ethics and practice of neonatal resuscitation at the limits of viability: an international perspective
    Fanaroff, Jonathan M.
    Hascoet, Jean-Michel
    Hansen, Thor Willy Ruud
    Levene, Malcolm
    Norman, Mikael
    Papageorgiou, Apostolos
    Shinwell, Eric
    van de Bor, Margot
    Stevenson, David K.
    [J]. ACTA PAEDIATRICA, 2014, 103 (07) : 701 - 708
  • [14] European variation in decision-making and parental involvement during preterm birth
    Gallagher, Katie
    Martin, John
    Keller, Matthias
    Marlow, Neil
    [J]. ARCHIVES OF DISEASE IN CHILDHOOD-FETAL AND NEONATAL EDITION, 2014, 99 (03): : F245 - F249
  • [15] Preferred prenatal counselling at the limits of viability: a survey among Dutch perinatal professionals
    Geurtzen, Ms Rosa
    Van Heijst, Arno
    Hermens, Rosella
    Scheepers, Hubertina
    Woiski, Mallory
    Draaisma, Jos
    Hogeveen, Marije
    [J]. BMC PREGNANCY AND CHILDBIRTH, 2018, 18
  • [16] 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, Rene F.
    Duvekot, Johannes J.
    Andriessen, Peter
    Heimel, Pieter J. van Runnard
    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
    [J]. PEDIATRICS, 2019, 143 (06)
  • [17] Prenatal counseling in extreme prematurity - Insight into preferences from experienced parents
    Geurtzen, Rosa
    van Heijst, Arno
    Draaisma, Jos
    Ouwerkerk, Laura
    Scheepers, Hubertina
    Hogeveen, Marije
    Hermens, Rosetta
    [J]. PATIENT EDUCATION AND COUNSELING, 2019, 102 (08) : 1541 - 1549
  • [18] Various experiences and preferences of Dutch parents in prenatal counseling in extreme prematurity
    Geurtzen, Rosa
    Draaisma, Jos
    Hermens, Rosella
    Scheepers, Hubertina
    Woiski, Mallory
    van Heijst, Arno
    Hogeveen, Marije
    [J]. PATIENT EDUCATION AND COUNSELING, 2018, 101 (12) : 2179 - 2185
  • [19] Professionals' preferences in prenatal counseling at the limits of viability: a nationwide qualitative Dutch study
    Geurtzen, Rosa
    van Heijst, Arno
    Draaisma, Jos
    Ouwerkerk, Laura
    Scheepers, Hubertina
    Woiski, Mallory
    Hermens, Rosella
    Hogeveen, Marije
    [J]. EUROPEAN JOURNAL OF PEDIATRICS, 2017, 176 (08) : 1107 - 1119
  • [20] Decision-making at the borderline of viability: Who should decide and on what basis?
    Gillam, Lynn
    Wilkinson, Dominic
    Xafis, Vicki
    Isaacs, David
    [J]. JOURNAL OF PAEDIATRICS AND CHILD HEALTH, 2017, 53 (02) : 105 - 111