Lived Experiences of Patients and Care Providers in Focal Segmental Glomerular Sclerosis and IgA Nephropathy
DEFINE highlights the wide-ranging burdens of FSGS and IgAN on patients and care providers. Findings underscore the need for holistic, patient-centered care that recognizes lived experience and provides consistent lifestyle guidance and emotional support. Greater collaboration among HCPs, industry, and patient organizations is essential to improve self-management and quality of life.
Authors
- Austin Taylor (ORCID: https://orcid.org/0000-0002-5864-711X)
- Juan Carlos Julián Mauro (ORCID: https://orcid.org/0000-0002-4839-311X)
- Meaghan A. Malley
- Mark Bensink (ORCID: https://orcid.org/0000-0002-5940-7898)
- Kelly Helm
- Jai Radhakrishnan (ORCID: https://orcid.org/0000-0003-3157-5141)
- Jürgen Floege (ORCID: https://orcid.org/0000-0001-7102-6150)
- Paméla Thébault
- Edward J. Thompson
- Jayne S. Wilson
- Kathy Machuzak
Institutions
- National Kidney Foundation (US)
- Columbia University Irving Medical Center (US)
- Universitätsklinikum Aachen (DE)
- Health Economics and Outcomes Research (United Kingdom) (GB)
- Colorado Kidney Care (US)
- Patient Advocate Foundation (US)
- Université de Rennes (FR)
- Universidad Autónoma de Madrid (ES)
- RWTH Aachen University (DE)
- National Patient Safety Foundation (US)
Publication Details
- Journal
- Glomerular Diseases
- Published
- 2025-12-19
- DOI
- https://doi.org/10.1159/000550113
- Primary Topic
- Renal Diseases and Glomerulopathies
- Type
- article
- Field-Weighted Citation Impact
- 0.00
Funders
- RWTH Aachen University