COMMON VS FREQUENT: ASSESSING VARIABLE DISEASE PRESENTATION IN IGAN AND C3G, THROUGH HOME-REPORTED OUTCOMES AND PATIENT-REPORTED ENDPOINTS ANALYSES
Author(s)
Hiba Anwar, MPH, Sarah Villard, PhD, Samantha McStocker, BS, Merika Sanders, PhD, Amanda Healey, MPH, Connie Zhang, MPH;
Folia Health, Boston, MA, USA
Folia Health, Boston, MA, USA
OBJECTIVES: IgA nephropathy (IgAN) and complement 3 glomerulopathy (C3G) are rare, chronic glomerulopathies associated with a myriad of symptoms. Assessments of these conditions typically rely on point-in-time surveys to measure burden, which may not capture the full day-to-day heterogeneity of the conditions. The Folia Health (FH) app collects granular, patient-reported longitudinal data on daily symptom experience, further supplementing the understanding of condition burden, unmet clinical needs, and impact to quality of life.
METHODS: As of January 2026, 53 patients across these conditions (33 IgAN; 20 C3G) have used the FH app for up to 9 months to track information about their symptoms. For each symptom tracked by FH users, three metrics were calculated: an index of how “common” the symptom was (e.g., what percentage of the study population experienced it), how “frequent” it was (e.g., how often it occurred for those who did experience it), and how “severe” it was (rated on a 0-5 Likert scale).
RESULTS: A total of 48 distinct symptoms were tracked by IgAN users; 63 symptoms were tracked by C3G users. Symptoms varied in terms of how common they were within condition population (range: 3%-48% for IgAN; 5%-65% for C3G), how frequent they were experienced (range: 0.19-6.71 days/month for IgAN; 0.12-24.43 days/month for C3G), and how severe they were (range: 1.38-4 for IgAN; 1-3.5 for C3G). Variability across all three indices enables useful visualization of symptom burden using XY mapping.
CONCLUSIONS: Findings from this analysis demonstrate that the symptom burden experienced by patients with IgAN and C3G is highly complex and can vary substantially from person to person. Future analyses will examine changes in both of these metrics over time, with the aspiration to better quantify treatment impact on symptom burden.
METHODS: As of January 2026, 53 patients across these conditions (33 IgAN; 20 C3G) have used the FH app for up to 9 months to track information about their symptoms. For each symptom tracked by FH users, three metrics were calculated: an index of how “common” the symptom was (e.g., what percentage of the study population experienced it), how “frequent” it was (e.g., how often it occurred for those who did experience it), and how “severe” it was (rated on a 0-5 Likert scale).
RESULTS: A total of 48 distinct symptoms were tracked by IgAN users; 63 symptoms were tracked by C3G users. Symptoms varied in terms of how common they were within condition population (range: 3%-48% for IgAN; 5%-65% for C3G), how frequent they were experienced (range: 0.19-6.71 days/month for IgAN; 0.12-24.43 days/month for C3G), and how severe they were (range: 1.38-4 for IgAN; 1-3.5 for C3G). Variability across all three indices enables useful visualization of symptom burden using XY mapping.
CONCLUSIONS: Findings from this analysis demonstrate that the symptom burden experienced by patients with IgAN and C3G is highly complex and can vary substantially from person to person. Future analyses will examine changes in both of these metrics over time, with the aspiration to better quantify treatment impact on symptom burden.
Conference/Value in Health Info
2026-05, ISPOR 2026, Philadelphia, PA, USA
Value in Health, Volume 29, Issue S6
Code
PCR71
Topic
Patient-Centered Research
Topic Subcategory
Patient-reported Outcomes & Quality of Life Outcomes
Disease
SDC: Urinary/Kidney Disorders