Recent survey reveals new findings about symptoms of pain and fatigue in people living with IgAN
The global survey of over 1500 people with IgAN also revealed a difference in the doctors’ and their patients’ perceptions of pain and fatigue.
A survey published in January in the clinical research journal, Kidney360, explored the realities of living with some of the most common symptoms of IgA Nephropathy (IgAN), a rare kidney disease. Researchers from around the world (Japan, China, Europe, and the US) were asked to review the charts of their patients who had a diagnosis of IgAN confirmed through biopsy, and to ask these patients to complete surveys about how their condition was impacting their lives.
IgAN Status of the 1515 Participants in the Survey
Over 1500 people with a confirmed diagnosis of IgAN agreed to participate, as well as 295 physicians who treated them. Both the physicians and the patients answered questions about the symptoms of fatigue and pain experienced from June to October, 2021. Along with the questionnaires, researchers examined the medical records to understand how levels of proteinuriea (elevated protein in the urine, which can be a sign of kidney damage) and eGFR (a blood test that measures how well your kidneys are filtering waste) may be connected to these symptoms.
The people who participated in the study were from many countries; 17.5% of them came from the USA. The average age of participants was 43 years old, and most (60%) were male, (70%) had been diagnosed over a year ago, and only 10% were diagnosed more than 10 years ago.
Three interesting findings came out of this study:
1. People with more protein in the urine and lower eGgFR levels in the blood experienced worse symptoms, which had a greater impact on their quality of life.
Physicians reported that the higher the levels of protein in the urine, the more likely the patient was to have fatigue:
61% with proteinuria <1 g/d
74% with 1–3g/d
88% with proteinuria >3g/d
Pain was reported by physicians in 46% of their patients.
High levels of eGgFR from blood tests, as well as high protein in the urine, were associated with fatigue and pain symptoms. These findings are not new to kidney specialists, who have recognized these signs and associated symptoms for a very long time.
2. Physicians underestimated fatigue symptoms experienced by their patients.
According to the doctors, more than half (58%) of their patients experienced fatigue, but according to the patients’ survey answers, 65% experienced fatigue.
Physicians were better at noticing pain in their patients, estimating it at 46%, close to the 47% reported by patients.
3. Physicians seemed more conscious about fatigue and pain in the patients who had higher protein levels.
Severe Fatigue by Increased Level of Proteinuria (1-3 and 3+)
Doctors reported more patients with fatigue (65%) who had higher proteinuria levels (1-3, or 3+). However, their estimate of how many patients with signs of proteinuria had fatigue was still lower than their patients’ experience (74%).
Patients with increased proteinuria and reduced eGFR experienced worse quality of life and work productivity across almost all measures. However, having to take days off from work (absenteeism) did not seem to increase based on either increased proteinuria or reduced eGFR.
Source: Kidney360. 2025; 6(1): 121–132, 2025. doi: https://doi.org/10.34067/KID.0000000613
What does this survey study mean for you?
See for yourself how much fatigue affects you. You can compare your scores to the findings in this article.
If you have IgA Nephropathy and would like to see to what extent fatigue is impacting your life, you can take the Fatigue Survey on HealthStoryai.com. It outlines 13 ways fatigue can affect you, and, if you score below 30, it means you have significant fatigue. Take the survey a few times over the course of 2 weeks, and see if your scores change or if they remain the same. HealthStoryai will provide you with scores and a summary to share with your kidney specialist, and may result in a recommendation that could make a difference.
