Abstract: INFO21-SA
Listening to Patients to Build a Patient-Centered Outcomes Agenda for IgAN: A Prospective Qualitative Study Protocol
Session Information
- Informational Posters - 3
October 24, 2026 | Location: Exhibit Hall A, Convention Center
Abstract Time: 10:00 AM - 12:00 PM
Category: Glomerular Diseases
- No subcategory defined
Authors
- Mashayekhi, Mahtab, Loma Linda University, Loma Linda, California, United States
- Gholizadeh Ghozloujeh, Zohreh, Loma Linda University, Loma Linda, California, United States
- Glassock, Richard J., University of California Los Angeles David Geffen School of Medicine, Los Angeles, California, United States
- Rizk, Dana V., University of Alabama at Birmingham Health System, Birmingham, Alabama, United States
- Norouzi, Sayna, Loma Linda University, Loma Linda, California, United States
Description
Despite the growing therapeutic landscape of IgA nephropathy (IgAN), clinical research in IgAN has remained anchored to surrogate biomarkers; mainly proteinuria and eGFR with patient-reported outcomes (PROs) and quality-of-life metrics incorporated in few randomized controlled trials. Although the biomarkers landscape is growing and new biomarkers are being introduced for IgAN; a fundamental disconnect exists between clinician-defined endpoints and the outcomes that patients and their caregivers consider most meaningful. Majority of IgAN patients get diagnosed by abnormal lab findings rather than symptomatic disease. This makes it more difficult to define meaningful PROs; however, this is a very important lack of knowledge which needs to be addressed. In this study, we are aiming to bridge this gap with systematic engagement of patients and caregivers using validated qualitative methods.
This is a prospective, observational, qualitative study using focus groups and the nominal group technique (NGT). We will recruit approximately 60-84 adults; comprising patients with biopsy-proven IgAN and their caregivers from Loma Linda University nephrology clinics and through partnerships with national patient advocacy organizations, including the IgAN Foundation. Participants will attend one semi-structured focus group session (2–8 participants; 75–110 minutes) conducted virtually or in-person. A structured discussion guide will explore lived experience, symptom burden, treatment goals, and patient-important outcomes. Using NGT, participants will individually generate and then collectively vote to prioritize their top outcomes. Transcripts will undergo thematic analysis using a hybrid inductive–deductive approach, with primary coding by a trained analyst and investigator audit for consistency (using NVivo). NGT prioritization results will be summarized descriptively overall and explored by patient versus caregiver groups.
This will produce the first systematically derived, patient-prioritized outcomes agenda for IgAN. Findings will directly inform the development of PROs, the selection of clinically meaningful endpoints for future clinical trials, and shared decision-making frameworks. Incorporating patient and caregiver voice into the IgAN research agenda is essential to align clinical research with the lived experience of those most affected.
Acknowledgment
This study is funded by Otsuka Pharmaceutical
Funding
- This study is funded by Otsuka Pharmaceutical