# Genetic Counseling Processes Result in Outcomes (GC-PRO) Study

> **NIH NIH R01** · UNIVERSITY OF MINNESOTA · 2022 · $707,418

## Abstract

Project Summary
In the 50 years since the genetic counseling profession began, a systematic study of genetic counseling (GC)
processes and outcomes in real-life sessions across specialties has never been conducted. In order to
optimize GC quality and improve efficiency of care, the field must first be able to accurately and
comprehensively measure GC processes and determine which processes are most critical to achieve positive
patient experiences and outcomes. The overarching objective of this study is to characterize GC processes
using a novel and pragmatic measure and to link variations in processes and session time to patient-reported
outcomes using a rigorous approach to define quality, efficient GC in practice. The central hypothesis is that
GC processes impact patient outcomes in complex ways and that by evaluating and linking processes with
outcomes we can identify ways to optimize GC quality and efficiency. To test the central hypothesis and attain
the overall objective, a reliable, pragmatic checklist will be used to measure GC processes in audio recorded
sessions and to characterize the extent and types of variability in GC processes across genetic counselors and
specialties using actual patient sessions of varying lengths. Surveys will measure patient experience,
empowerment, activation, decisional and informational needs and information overload. Coincidence analysis
will be conducted to identify patterns of GC processes that consistently make a difference for high scores on
each patient-reported measure. Comparison of the extent to which characteristics of GC sessions (including
time) influence variability in the processes used and variability in patient outcomes will be accomplished
through random effects multilevel models. We will then test the effectiveness of a GC efficiency intervention
that tailors counseling to a patients’ informational preferences and values assessments and removes select
processes found not to contribute to differences in patient outcomes using a stepped-wedge randomized
controlled study. The study will integrate perspectives from four community advisory boards and a genetic
counselor advisory board to provide vital input throughout the study process. This participatory approach was
chosen to leverage diverse perspectives to create research that is feasible, acceptable, and usable beyond the
research environment. The results of this study will be useful in considering which GC processes are essential
for optimizing various patient outcomes in minimal time for a diversity of patients. This study is expected to
improve measurement of GC processes, more clearly delineate differences in genetic counseling processes
and patient reported outcomes, and increase genetic counseling efficiency by reducing in person visit times
while maintaining or improving quality patient outcomes.

## Key facts

- **NIH application ID:** 10446324
- **Project number:** 1R01HG011916-01A1
- **Recipient organization:** UNIVERSITY OF MINNESOTA
- **Principal Investigator:** Heather Zierhut
- **Activity code:** R01 (R01, R21, SBIR, etc.)
- **Funding institute:** NIH
- **Fiscal year:** 2022
- **Award amount:** $707,418
- **Award type:** 1
- **Project period:** 2022-09-21 → 2026-06-30

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/10446324

## Citation

> US National Institutes of Health, RePORTER application 10446324, Genetic Counseling Processes Result in Outcomes (GC-PRO) Study (1R01HG011916-01A1). Retrieved via AI Analytics 2026-05-27 from https://api.ai-analytics.org/grant/nih/10446324. Licensed CC0.

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