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

NIH RePORTER · AHRQ · R01 · $285,658 · view on reporter.nih.gov ↗

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
EMORY UNIVERSITY
Principal Investigator
Chia-shi Wang
Activity code
R01
Funding institute
AHRQ
Fiscal year
2024
Award amount
$285,658
Award type
1
Project period
2024-09-30 → 2029-07-31