Abstract: TH-PO0554
Living with IgAN: A Patient Diary Study
Session Information
- Glomerular Diseases: IgAN, IgA Vasculitis, and More
October 22, 2026 | Location: Exhibit Hall A, Convention Center
Abstract Time: 10:00 AM - 12:00 PM
Category: Glomerular Diseases
- 1402 Glomerular Diseases: Clinical, Outcomes, and Therapeutics
Authors
- Suengas, Monica, IgAN Friends, European Kidney Patients’ Federation, Madrid, Spain
- Santos, Lucy, Medical, CSL, Zurich, Switzerland
- Colombo, Giulia, Patient Advocacy, CSL, Bruxelles, Belgium
- Barratt, Jonathan, College of Life Sciences, University of Leicester, Leicester, United Kingdom
Background
IgAN, the most prevalent glomerulonephritis worldwide, is a major cause of kidney failure. Due to the chronic and unpredictable nature of IgAN and its varied severity, capturing comprehensive patient insights with a single interaction is challenging. Here, we used patient diaries to determine the impact of IgAN on patients’ daily lives, challenges, and quality of life
Methods
Eligible European patients (biopsy-confirmed IgAN diagnosis; treatment-naive or exposed; with/without kidney transplant) completed 60-minute self-ethnographic mobile diaries (10-minute content/week), including 6 tasks (IgAN journey introduction, understanding symptoms/diagnosis, changes following diagnosis, community support, treatments, letter to past-self about IgAN). Patient diaries were collated using the 9 Dial Patient Model, assessing impact (physical, emotional, and cognitive), framing (personal, significant others, and socio-cultural), and treatment (activation level, adherence, and trade-off).
Results
Overall, 30 patients were identified from UK (n=11), Germany (n=10), and France (n=9; Table). Most patients experienced a prolonged journey to diagnosis, attributed to self-dismissal of gradual symptoms and delay in presentation to primary care. Visible hematuria was an alarming symptom that prompted an urgent GP visit for most patients, but IgAN was not well known in primary care. There was an emotional burden that peaked at diagnosis and during symptom progression, including anxiety and fear of dialysis; 9 patients reported anxiety before medical appointments and 9 patients reported depression related to IgAN. Ten patients reported a disconnect between diagnosis and lack of physical symptoms, which may cause stress or confusion. Most patients (largely in Germany and France) had low engagement with support groups and lacked education about IgAN.
Conclusion
Patients with IgAN often experience discouragement, which may reflect observed factors such as self-dismissal of initial symptoms, limited treatments, and challenging patient journeys. Due to low disease awareness, patients can experience diagnosis delays which may be indicative of a system-level issue.
Table. Baseline patient characteristics
Funding
- Commercial Support – CSL