# Decision Making for Infants with Neurologic Conditions

> **NIH NIH K23** · DUKE UNIVERSITY · 2021 · $188,460

## Abstract

My career goal is to develop an independent research program focused on improving shared
decision making for children with neurologic disease.
 Parents of infants with neurologic conditions frequently face life and death decisions. A good quality
decision in this context is one in which clinicians and parents engage in shared decision making, a process by
which clinicians provide decision-relevant medical information, and partner with parents to help them
incorporate preferences for how to make trade-offs between death and life with disability. Despite the high
frequency and stakes of management decisions in neonatal neurology, we lack 1) empiric data on how these
choices are made and 2) tools to promote good quality decisions through shared decision making.
 The goal of this Mentored Clinical Scientist Research Career Development Award (K23) is to develop a
targeted decision aid for parents of infants with neurologic conditions. We will first characterize decision
making and prognostic discussion in a longitudinal, mixed methods study. We will enroll 50 cases, consisting of
an infant, their parent(s), and their physician(s). We will follow each case along a 6-month trajectory and audio
record parent-clinician conferences as they occur. To complement data from real-time discussions, we will
survey and interview parents after each conference, at infant discharge, and 6 months after infant discharge or
death. Clinicians will complete post-conference surveys. Data analyses will integrate quantitative and
qualitative methodologies. First, we will characterize decision making processes in parent-clinician
conversations using qualitative analysis and established metrics of shared decision making. We will then
analyze the content of prognostic discussion—how parents and clinicians discuss expected infant outcomes—
and determine how often parents and clinicians have a concordant understanding of infant prognosis.
 These data will directly inform the development and testing of a decision aid to enhance shared
decision making for infants with neurologic conditions. We will develop the decision aid using the International
Patient Decision Aids Standards, and will refine the tool through usability and cognitive testing. We will test the
acceptability of the decision aid in a single-arm feasibility study. We will enroll 30 infants with neurologic
conditions, their parent(s), and their physician(s) in advance of a planned goals-of-care conference. Enrolled
parents will receive the decision aid in advance the conference. We will survey parents at baseline; parents
and clinicians will also be surveyed following the goals-of-care conference.
 Upon completion of this Award, I will have the data and skillset necessary to study this intervention in a
randomized control trial, which serve as the basis for a R01 submission. The rigorous training provided by this
Award will prepare me well for a career dedicated to improving parent-clinician communication and decision
...

## Key facts

- **NIH application ID:** 10090661
- **Project number:** 5K23NS116453-02
- **Recipient organization:** DUKE UNIVERSITY
- **Principal Investigator:** Monica Lemmon
- **Activity code:** K23 (R01, R21, SBIR, etc.)
- **Funding institute:** NIH
- **Fiscal year:** 2021
- **Award amount:** $188,460
- **Award type:** 5
- **Project period:** 2020-02-01 → 2025-01-31

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/10090661

## Citation

> US National Institutes of Health, RePORTER application 10090661, Decision Making for Infants with Neurologic Conditions (5K23NS116453-02). Retrieved via AI Analytics 2026-05-23 from https://api.ai-analytics.org/grant/nih/10090661. Licensed CC0.

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