Real-World Survey on Healthcare Resource Utilization and Physician-Reported Burden in Patients With Primary Immune Complex Membranoproliferative Glomerulonephritis
Speaker(s)
Rich C1, Decker D2, Jackson J3, Clayton S4, Fitzmaurice K3, Lowe M3, Gordon K2
1Swedish Orphan Biovitrum AB, Stockholm, Sweden, 2Apellis Pharmaceuticals, Waltham, MA, USA, 3Adelphi Real World, Bollington, UK, 4Adelphi Real World, Bollington, CHW, UK
Presentation Documents
OBJECTIVES: To describe the burden primary Immune Complex Membranoproliferative Glomerulonephritis (IC-MPGN) has on healthcare resource utilization (HCRU) and patients.
METHODS: Data were drawn from the Adelphi Real World IC-MPGN Disease Specific Program™, a cross-sectional survey of IC-MPGN-treating nephrologists in France, Germany, Italy, Spain and the United States of America from February–May 2024. Physicians reported demographics, consultations, testing, and hospitalizations over the previous 12 months of treatment, for 4 consecutively consulting patients. Analyses were descriptive.
RESULTS: In total, 53 physicians provided data for 134 patients with primary IC-MPGN (128 adults and 6 pediatric). Mean [standard deviation; SD] patient age was 44.4 [16.0] years and 56% were male.
Physicians (51%) believed that IC-MPGN was a major problem in patients’ everyday life, and that it caused considerable emotional upset (55%) and impacted on the ability to work/study (38%). Over the previous 12 months, patients attended a mean [SD] of 9.2 [8.3] appointments for their IC-MPGN, including 4.9 [5.3] with a nephrologist, 2.1 [2.0] with a general practitioner and 2.1 [2.9] with a nurse. A mean [SD] of 25.6 [12.2] laboratory tests were conducted to monitor patients IC-MPGN, including a mean [SD] of 4.0 [2.1] serum creatinine, 3.8 [1.8] blood hemoglobin, 3.5 [1.5] eGFR, 3.2 [1.3] urinalysis-assessed hematuria, 3.2 [1.3] urine albumin/creatinine ratio, and 3.1 [1.2] urine protein/creatinine ratio tests. Beyond diagnostic biopsy, 41% of patients had a subsequent kidney biopsy, often due to significant proteinuria (65%), and 15% of patients had at least one hospitalization. At most recent hospitalization, 56% were admitted via emergency room, with 88% admitted overnight. Median [interquartile range] duration of stay was 4.5 [2.0–7.5] days.CONCLUSIONS: Primary IC-MPGN was associated with substantial HCRU burden, emotional upset and disruption to patients’ lives, highlighting the need for effective, targeted treatment modalities to reduce overall burden for this patient population.
Code
EE30
Topic
Clinical Outcomes, Economic Evaluation, Study Approaches
Topic Subcategory
Clinician Reported Outcomes, Surveys & Expert Panels
Disease
Rare & Orphan Diseases, Urinary/Kidney Disorders