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

Josephus F M Van Den Heuvel,Margo Lutke Holzik,Marije Hogeveen,Rosa Geurtzen,Arno F J Van Heijst,Mireille N Bekker

doi:10.1186/s12911-021-01735-z

Abstract

BackgroundIn 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.MethodsThis 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).ResultsThe 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.ConclusionA 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.

Highlights

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
Development The digital decision aid (DA) was developed using a model development process that includes all original elements of the systematic process established by the International Patient Decision Aid Standards (IPDAS)[21].This process is summarized in Fig. 1 and each stage is described below
Different steps of perinatal counseling functioned as an outline for the construction of the DA, and this is the order in which the information is presented to the users

Summary

Introduction

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. 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. Pregnant women and their partners presenting with imminent extreme premature labor are facing treatment options regarding the provided care in case their infant is born alive: palliative comfort care or early intensive care. Despite different definitions of this gray zone of parental discretion, parental counseling is needed to agree on the preferred treatment option, ideally based on shared decision making between the pregnant woman, her partner (further referred to as parents), van den Heuvel et al BMC Medical Informatics and Decision Making (2022) 22:7 obstetrician and neonatologist [9,10,11,12]. Intensive care can be described as the resuscitation of the premature infant and the initiation of neonatal intensive care

Methods

Results

Discussion

Conclusion