# HeartPREP: A virtually-delivered psychosocial intervention for mothers expecting a baby with congenital heart disease

> **NIH NIH P20** · NEMOURS CHILDREN'S HOSPITAL, DELAWARE · 2022 · $135,738

## Abstract

PROJECT SUMMARY
Congenital heart disease (CHD) is the most common birth defect. CHD affects all racial, ethnic, and
socioeconomic groups, yet underserved populations (e.g., low-income Black and Hispanic patients) are
disproportionally affected by disease-related morbidities. They are more likely to be delivered preterm, to be
readmitted to the hospital after surgery, to exhibit developmental delays, and ultimately, to die from CHD. CHD
is increasingly diagnosed prenatally across racial/ethnic groups. While prenatal diagnosis can be beneficial for
the infant in that it facilitates medical care immediately following birth, mothers describe their prenatal
experiences as highly stressful and traumatic. Maternal stress during pregnancy exerts a powerful influence on
birth outcomes and developmental trajectories, particularly for children in underserved populations. Targeted
efforts to mitigate impacts of maternal stress for this highly vulnerable population are lacking. In partnership with
diverse parent and clinician stakeholders, our team designed HeartPREP, an innovative, virtually-delivered
psychosocial intervention for mothers expecting a baby with CHD. HeartPREP will be delivered in English and
Spanish through the Nemours App, an accessible tool for telehealth, education, and communication with
clinicians. The proposed study will evaluate whether HeartPREP improves maternal and family outcomes
following prenatal diagnosis of CHD. Participants across all study aims will be diverse expectant mothers carrying
a fetus identified as having CHD, recruited from two hospitals within the Nemours Children’s Health System. We
have assembled a team of experts in family-based psychosocial intervention and patient-centered outcomes
research to (Aim 1) refine HeartPREP through Think Aloud Testing with 15-20 expectant mothers and evaluate
initial feasibility, usability, and acceptability through beta testing with 10 expectant mothers, (Aim 2) determine
whether HeartPREP modules produce clinically significant improvements on outcomes (emotional distress,
social isolation, parenting self-efficacy, and hope; measured by PROMIS) in 20 expectant mothers (Proof-of-
Concept), and (Aim 3) evaluate the impact of HeartPREP compared to standard care control (SCC). Sixty
expectant mothers carrying a fetus identified as having CHD will be randomized to HeartPREP or SCC and will
complete assessment of outcomes weekly during intervention (emotional distress, social isolation, parenting
self-efficacy, and hope) and at post-intervention and 3-month postnatal follow-up (anxiety, depression, traumatic
stress, and couple/family functioning). An R01 application planned for Year 2 would fund expansion of Aim 3 into
a multi-site efficacy trial. HeartPREP has the potential to improve the emotional wellbeing of mothers expecting
a baby with CHD, thereby altering developmental trajectories for this large population of children. This model
can then be adapted for other birth defects (3% ...

## Key facts

- **NIH application ID:** 10335388
- **Project number:** 1P20GM144270-01
- **Recipient organization:** NEMOURS CHILDREN'S HOSPITAL, DELAWARE
- **Principal Investigator:** Erica D Sood
- **Activity code:** P20 (R01, R21, SBIR, etc.)
- **Funding institute:** NIH
- **Fiscal year:** 2022
- **Award amount:** $135,738
- **Award type:** 1
- **Project period:** 2022-03-01 → 2027-02-28

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/10335388

## Citation

> US National Institutes of Health, RePORTER application 10335388, HeartPREP: A virtually-delivered psychosocial intervention for mothers expecting a baby with congenital heart disease (1P20GM144270-01). Retrieved via AI Analytics 2026-05-26 from https://api.ai-analytics.org/grant/nih/10335388. Licensed CC0.

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