Abstract
Abstract Background and Aims Immunoglobulin A nephropathy (IgAN) is the most prevalent primary glomerulonephritis globally; it has a significant health burden and a highly variable disease course. As IgAN is a heterogeneous disease, it is important to appreciate the associated patient characteristics in order to understand disease progression and how best to implement individualised treatment regimens. To determine the patient characteristics associated with IgAN, a physician questionnaire and patient chart audit were conducted. Method From 21 December 2022 to 6 February 2023, physicians from five European countries (France, Germany, Spain, Italy and the UK) completed a questionnaire and patient chart review of their IgAN patients. Physicians were required to have ≥50 patients with stage 1–4 chronic kidney disease (CKD); at least four of these were required to be non-dialysis IgAN patients. Patients whose charts were included were required to be aged 12 years or older, non-dialysis IgAN patients and have an estimated glomerular filtration rate of ≥15 mL/min/1.72 m2. The charts included were required to be from patients who had seen a participating physician within the prior 6 months. Results 261 physicians answered the questionnaire and completed chart audits on 473 of their most recently seen patients. Patient charts audited were largely from male (71%) Caucasian (78%) patients from 31–49 years of age (38%). 22% of patients were referred to their current physician within the past year. Most patients (70%) were referred by a primary care physician and 9% by another nephrologist. Of those referred by a nephrologist, 32% were referred for specialised care. Participating physicians perceived that close to 30% of patients were referred to them late or extremely late, with contributing factors including lack of engagement from patients with annual follow-ups and patients remaining asymptomatic for a long time. At the most recent visit, 24.3% had CKD stage 1 or 2, 26.6% of patients had CKD stage 3a, 30.4% had stage 3b and 18.6% had stage 4 disease. Nephrologists characterised 53% of their CKD stage 4 patients as having severe IgAN. The symptoms reported with greatest frequency at the most recent visit included fatigue (59%), blood in the urine (41%) and increased weight gain (41%). In total, 71% of patients had proteinuria >0.5 g/day (8% had no values available) and 8% of patients had nephrotic syndrome (urine protein >3.5 g/day and low serum albumin). In total, 28% of patients had no co-morbid conditions. More than half (54%) of the patients whose charts were audited had comorbid hypertension. Other comorbidities included hyperlipidaemia (22%), obesity (17%), type 2 diabetes (15%) and peripheral oedema (7%). Counterintuitively, when asked about the overall health of their patients, physicians perceived the majority (98%) of patients to be in good or excellent overall health. Patients were prescribed five medications on average, with most (92%) taking an angiotensin converting enzyme inhibitor or angiotensin receptor blocker, or both. The number of medications prescribed increased after the age of 50. Two-thirds (66%) of physicians felt that patients completely adhered to their treatment regimen. However, 54% of physicians reported some form of dissatisfaction with the response of their patients to their overall treatment regimen; though, levels of satisfaction varied between individual treatment options. Conclusion Despite high rates of proteinuria and patients often in late-stage CKD at referral, physicians perceived the majority of patients to be in good or excellent overall health, revealing a potential gap in physicians’ perceptions of patients’ health and their risk of progression to kidney failure. As a result, patients were often diagnosed or referred late and their perception of their own health may have led to a lack of engagement with physicians. These data indicate that there is an unmet need for early diagnosis and treatment of IgAN to ensure that patients receive appropriate care.
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