# Promoting Shared Decision Making in Periviable Care: A randomized controlled trial of the Periviable GOALS Decision Support Tool

> **NIH AHRQ R01** · INDIANA UNIVERSITY INDIANAPOLIS · 2021 · $399,798

## Abstract

Periviable neonates, born between 22 0/7 - 24 6/7 weeks gestational age, cannot survive outside of the womb
without support. Even with support, 40% of these neonates die, and, among survivors, roughly half suffer
moderate to severe disability. These births are financially and emotionally costly to families, and all of these
burdens are most heavily born by Black families, as Black infants are 3 times more likely to be born extremely
premature. Because mortality is high and outcomes can be poor, the American Academy of Pediatrics calls for
shared decision making (SDM) when families face these decisions—so that parents are engaged in
deliberations, and, ultimately, choose whether to attempt resuscitation or pursue palliation. Our preliminary
research suggests that, despite these recommendations, the current model of periviable decision making is not
shared, well-informed, or patient-centered. Mortality and morbidity estimates provided are variable and
inaccurate; there is conflicting guidance regarding antenatal interventions; and goals of care or resuscitation
preferences are not always elicited. By presenting parents with inconsistent information without eliciting and
clarifying values and goals of care, providers place parents at substantial risk for misinformed decision making,
decisional conflict, and decisional regret. Our previous work also shows that poor decision quality is associated
with poor postpartum parental mental health. To optimize these high-stakes counseling encounters, we have
utilized a novel approach to design, in partnership with patient and clinician stakeholders, a decision support
intervention - the Periviable GOALS (Getting Optimal Alignment around Life Support) decision support tool
(DST). This DST is meant to facilitate informed SDM regarding neonatal resuscitation. Periviable GOALS DST
is designed for parents to review independent of their clinician, and is intended to supplement, not replace,
clinician counseling. The focus of the DST is the provision of patient-centered outcomes information and
assistance with values clarification regarding neonatal outcomes. With the completion of pilot testing, we are
ready to conduct a multisite, randomized controlled trial to test the effect of the Periviable GOALS DST on: a)
decision quality (i.e., shared decision-making, knowledge, decisional conflict, decision satisfaction, and
decision regret), b) mental health (i.e., depression, anxiety, and post-traumatic stress in the postpartum
period), and c) neonatal treatment preference (i.e., resuscitation or comfort care). We hypothesize that
participants who utilize the GOALS DST will have improved decision quality, particularly in regard to SDM
(primary outcome), and improved mental health outcomes. This work stands to improve the quality of
periviable care by ensuring more informed and patient-centered decision-making. Our methodology is
innovative, as we are offering patients a stronger voice in research design and, ultimately, ...

## Key facts

- **NIH application ID:** 10366336
- **Project number:** 1R01HS028001-01A1
- **Recipient organization:** INDIANA UNIVERSITY INDIANAPOLIS
- **Principal Investigator:** MIRIAM KUPPERMANN
- **Activity code:** R01 (R01, R21, SBIR, etc.)
- **Funding institute:** AHRQ
- **Fiscal year:** 2021
- **Award amount:** $399,798
- **Award type:** 1
- **Project period:** 2021-09-30 → 2026-08-31

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/10366336

## Citation

> US National Institutes of Health, RePORTER application 10366336, Promoting Shared Decision Making in Periviable Care: A randomized controlled trial of the Periviable GOALS Decision Support Tool (1R01HS028001-01A1). Retrieved via AI Analytics 2026-05-22 from https://api.ai-analytics.org/grant/nih/10366336. Licensed CC0.

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