Symptom Perception Among Patients With IgAN and Their Nephrologists

The estimated prevalence of immunoglobulin A nephropathy (IgAN), the most common form of primary glomerulonephritis worldwide, is approximately 25/100,000,000. Clinical manifestations associated with IgAN include hematuria, proteinuria, and hypertension.

During a presentation at the ERA 60th Congress, Nicholas R Medjeral-Thomas, MBBS, PhD, and colleagues reported results of an analysis comparing perceptions of symptom burden, disease severity, and treatment satisfaction between patients with IgAN and their nephrologists in Europe, the United States, and Asia. The presentation was titled IgA Nephropathy: A Real-World Comparison Between Disease Severity, Symptom Burden, and Treatment Satisfaction Reported by Patients and Nephrologists.

The analysis utilized data from the Adelphi IgAN Disease Specific Programme, a point-in-time survey of nephrologists and their consulting IgAN patients. The survey was conducted in the United States, Europe (EU5: France, Germany, Italy, Spain, United Kingdom), Japan, and China from June to October 2021. Structured online patient record forms for successive patients presenting with IgAN were completed by participating nephrologists. Patients voluntarily completed questionnaires that corresponded with the nephrologists’ records. Reported data included demographics, signs and symptoms of IgAN, disease severity, and treatment satisfaction.

Data on 991 patients with IgAN and matched nephrologists were collected. Mean patient age was 42.1 years and 57% were male. Perceived severity of disease was reported on a scale of mild, moderate, and severe. Overall, nephrologists and patients agreed on disease severity for 77% of patients (n=981) (United States, 82%; EU5, 77%; Japan;70%, and China, 78%).

Where patients reported nausea/vomiting, it was not recognized by nephrologists in 85% of cases. Results were similar for appetite loss (80%), headaches/migraines (69%), and aching joints (67%). Overall, nephrologists and patients agreed on a fatigue score in 33% of cases (n=991). In comparison with fatigue reported by patients, nephrologists underreported fatigue in 46% of cases and overreported in 21% of cases. In 53% of cases, nephrologists agreed with patients’ self-reported pain score (n=988). Pain was underreported by nephrologists in 26% of cases and overreported in 21% of cases.

Overall, there was a 65% agreement between nephrologists and patients on treatment satisfaction. The percentage agreement varied across countries: EU5, 76%; United States, 77%; China, 61%; Japan, 58%.

In summary, the researchers said, “Although there seemed to be a good level of agreement between nephrologists and patients on their overall IgAN severity, nephrologists underreported patients’ symptoms, notably nausea/vomiting and appetite loss, and fatigue…Satisfaction with current treatment also differed in around a third of cases.

“This highlights that communication between nephrologists and their patients can be improved, especially when it comes to appreciating IgAN symptom burden. This could be combated through more investment in a holistic patient evaluation, Cultural differences may impact symptom perception and reporting, as evidenced by differences between nephrologists and patients in different countries/regions. An improvement in communications may lead to a better management of IgAN patients, including treatment, and, subsequently, a better quality of life for patients with IgAN.”

Source: Medjeral-Thomas NR, Aldworth C, Kattlun J, Thomas George A, Decourcy J, Chatterton E. IgA nephropathy: a real-world comparison between disease severity, symptom burden, and treatment satisfaction reported by patients and nephrologists. Presentation #5514. Abstract of a presentation at the European Renal Association 60th Congress; June 15-18, 2023; Milan, Italy.