A digital decision aid for shared decision-making in prenatal counseling

When pregnant women and their partners experience imminent extreme premature labor, they must decide how to proceed if labor continues. With the risks of morbidity and mortality in extremely premature infants, 2 procedures are considered treatment options. Through shared decision-making with their provider, patients choose treatment based on their values and preferences; Palliative comfort care—providing warmth and comfort with no medical assistance—or early intensive care—resuscitation of the infant and initiation of neonatal intensive care (NICU).

Because the treatment options for imminent extreme premature labor center largely on patient preference, decision aids (DA) can help facilitate the patient-provider discussion and guide the shared decision-making process.

Providers often use DA tools to assist in patient education, prenatal counseling, and shared treatment decisions regarding imminent extreme premature labor, including:

• A card set with images and illustrations of survival rates and NICU complications
• 10-minute video clips of parents discussing treatment choice and explaining their decision
• a tablet application
• a virtual reality experience

Researchers in the Netherlands developed an open-access, web-based DA that informs, guides, and supports the prenatal counseling process for patients and providers.¹

Dutch national guidelines for prenatal counseling in imminent extreme preterm labor were published in 2019 using the International Patient Decision Aid Standards (IPDAS) process. They conducted surveys and interviews with patients and providers to determine general views and preferences on prenatal counseling, as well as DA preferences and concerns. They concluded that, while both patients and providers wanted supportive materials to assist verbal conversation, they were not readily available.

Researchers in the Netherlands used these initial findings to inform development of a digital DA. To create the prototype, they recruited individuals previously involved in the Dutch guidelines’ development for multiple rounds of testing—6 sets of parents with children born extremely premature (between 240/7 weeks and 246/7, 2 obstetricians, 1 neonatologist, 1 expert in quality-of-care improvement, 1 DA-development professional, and 1 Dutch language expert.

An online module, complete with graphics, then became the initial prototype. Researchers tested feasibility on a group of providers and pregnant women who were not involved in earlier testing. Patients comprised of 2 groups—group 1 comprised pregnant women between 240/7 and 24 6/7 weeks gestation who presented to an outpatient clinic for a routine antenatal visit with no history of premature delivery (n=4). The second group included pregnant women admitted for imminent preterm labor <246/7 weeks gestation and received antenatal counseling (n=3).

Clinician participants included 4 obstetricians and 4 neonatologists from 2 Dutch university hospitals with NICU facilities. Both parties filled out a questionnaire consisting of a rating from 1-5 (very much disagree-very much agree), plus 3 elements they liked and 3 that could be improved.

Researchers ultimately included the following informational content into the DA:

• General information on imminent extreme premature labor
• explanation of the 2 options: early intensive care or palliative comfort care
• consequences of comfort care (such as, no need for invasive procedures, expected death within hours following birth)
• mortality and survival rates
• risks and long-term results for extreme preterm infants to have neurodevelopmental
• physical, visual, and hearing problems

For decision support, they included a comparison page, key points, and “my choice,” which reflected parental values and standards. Visual elements in the DA included an illustration of 2 neonates to compare size and weight after extreme preterm birth and term delivery, an image of an extremely preterm infant in an incubator (active care) with notes on all life-supporting devices, an image of parents holding an infant in blankets (comfort care) and illustrations to show possible disabilities.

In its final form, the DA became a web-based platform available to Dutch providers and patients via internet, tablet, and smartphone browsers. It has been approved by the Dutch Society of Obstetrics and Gynecology, the Dutch Pediatric Society, and the Dutch patient organization CARE4NEO.

The decision-support elements in this web-based DA tool set it apart from others currently available. Researchers noted that the DA should support, not replace, the verbal counseling conversation. It may also be used by patients prior to and following counseling.

“Focusing on the format and distribution of our DA, we developed a freely available online DA and, moreover, included features to support decision making and help parents think about their values and preferences,” the authors wrote. “This is anticipated to enhance the uptake and use of the DA amongst different types of users, and we hope to increase the involvement of parents in decision-making.”

Reference

1. van den Heuvel JFM, Hogeveen M, Lutke Holzik M, van Heijst AFJ, Bekker MN, Geurtzen R. Digital decision aid for prenatal counseling in imminent extreme premature labor: development and pilot testing. BMC Med Inform Decis Mak. 2022;22(1):7. Published 2022 Jan 6. doi:10.1186/s12911-021-01735-z