# Supporting shared decision making in childhood nephrotic syndrome to improve care for children of racial and ethnic minority and low income background

> **NIH AHRQ R01** · EMORY UNIVERSITY · 2024 · $285,658

## Abstract

Project Summary/Abstract
Childhood nephrotic syndrome is a leading chronic kidney disease among children and adolescents that
disproportionally affects racial and ethnic minority children who face higher disease incidence, risk of treatment
failure, risk of hospitalizations and kidney failure. Treatment for childhood nephrotic syndrome is formidable for
children and their families. The treatment options require complex dosing and result in significant and varied
side effects and monitoring needs. Patients and their families, particularly those who are socially
disadvantaged, have difficulty participating in treatment selection due to barriers including lack of information,
lower health literacy, and less access to and engagement with providers. Without patient and family
participation, the chosen treatment may not meet patient expectations or align with their preferred side-effect to
efficacy trade-off, threatening adherence and downstream clinical outcomes. Our objective is to create tools to
support patients and families in shared decision making for childhood nephrotic syndrome treatment selection
in order to achieve patient-centered care and improve outcomes for vulnerable low income and racial and
ethnic minority children. We proposed a mixed-methods study with the following aims: 1) Elicit the experiences
of providers and parents and adolescent patients of diverse socioeconomic backgrounds with choosing
therapeutic agents using in-depth interviews informed by the Ottawa Decision Support Framework in order to
systematically identify influences on shared decision making, 2) Collaboratively create SDM support tools with
stakeholders in accordance with the International Patient Decision Aid Standards and assess the content
validity, understandability, and actionability of the developed tools to determine their relevance for promoting
SDM in childhood NS treatment selection, and 3) Assess preliminary effectiveness and feasibility of the tools in
a quasi-experimental, 2-group design in two large pediatric nephrology centers in the Southeast U.S. Our
theory and evidence-informed study is an innovative application of shared decision making support to address
health inequities in childhood nephrotic syndrome. Our goals align with AHRQ's interest to improve healthcare
quality for low income and minority groups through rigorous formative research, expert and stakeholder-
engaged development of patient-centered, culturally sensitive shared decision making support tools, and pilot
testing in real-world clinical settings.

## Key facts

- **NIH application ID:** 10978376
- **Project number:** 1R01HS029677-01A1
- **Recipient organization:** EMORY UNIVERSITY
- **Principal Investigator:** Chia-shi Wang
- **Activity code:** R01 (R01, R21, SBIR, etc.)
- **Funding institute:** AHRQ
- **Fiscal year:** 2024
- **Award amount:** $285,658
- **Award type:** 1
- **Project period:** 2024-09-30 → 2029-07-31

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/10978376

## Citation

> US National Institutes of Health, RePORTER application 10978376, Supporting shared decision making in childhood nephrotic syndrome to improve care for children of racial and ethnic minority and low income background (1R01HS029677-01A1). Retrieved via MORVS 2026-10-26 from https://api.morvs.ai/grant/nih/10978376. Licensed CC0.

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