Nephrology

IgAN & C3G

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Living With Fatigue From Glomerular Disease

conference reporter by Carla M. Nester, MD, MSA, FASN
Overview

Glomerular disease can have a profound impact on patient quality of life, especially in those patients who are experiencing fatigue that disrupts their daily lives, including school and work. This important topic was discussed at the American Society of Nephrology’s Kidney Week 2023 meeting.

 

Following these proceedings, featured expert Carla M. Nester, MD, MSA, FASN, was interviewed by Conference Reporter Medical Writer Rick Davis. Dr Nester’s clinical perspectives on this topic are presented here.

“I would say that the complaint I get the most from my patients with glomerular disease is, hands down, this idea of fatigue or that they feel 'fuzzy headed.' In fact, a number of patients report that having chronic glomerular disease or active glomerular disease makes them fatigued. . . .”
— Carla M. Nester, MD, MSA, FASN

Reports on patients’ experiences of living with glomerular disease were a little more abundant at Kidney Week 2023 compared with those from previous years. I would say that the complaint I get the most from my patients with glomerular disease is, hands down, this idea of fatigue or that they feel “fuzzy headed.” In fact, a number of patients report that having chronic glomerular disease or active glomerular disease makes them fatigued, and this was represented in abstracts from this year’s meeting reporting on the amount of fatigue that patients are experiencing (abstracts PUB302 and TH-PO646). Interestingly, in my experience, there is a part of the disease (ie, fatigue) that does not seem to be affected or addressed by standard of care, and that is plaguing these patients.

 

The bottom line is that fatigue is very important to patients. It interferes with their daily lives, whether it is someone in school or someone who must go to work every day. Patients are affected not only by the fatigue itself and by just feeling like they cannot accomplish their day-to-day tasks but also by wondering whether they will be able to think straight, take an exam, or present a case to their boss, for example. I think that this can be very difficult.

 

Really, what it boils down to is that the patient experience is fairly significant here because they are dealing with their glomerular disease symptoms chronically. This also goes back to nephologists’ hope for a targeted therapy in that, if you truly are targeting the root of the disease and can cause the disease to go in remission, we would certainly hope that one of the aspects of that care would be that it would resolve the patient’s fatigue.

 

We really do not have any data on the impact of glomerular disease treatments on fatigue, and I am not aware of any therapies that have actually worked to reduce fatigue. However, we seem to be somewhat lax about reporting on patient-reported outcomes. We need to close that loop and potentially even fix the primary outcomes because nephrologists really need to see if a therapy can alleviate—or at least mitigate—some of the patient-reported outcomes.

 

In terms of managing patient expectations regarding their fatigue, truthfully, there is not a single solution that works the best. I do the usual things, meaning that I want to make sure that patients are sleeping well at night, eating well, and getting exercise; in other words, doing things that keep their bodies healthy. Even if patients are experiencing this concept of fuzzy headedness or are just feeling worn out all the time, they still need to progress to doing those things.

 

Further, I often will ask people to see if they are able to do hobbies or find things that they can do well without putting quite so much pressure on themselves to do them. I think that if they can balance their lives with other things that are going well, even if they are feeling a little slower than usual, they may, at least psychologically, feel a little bit better. Nothing is as good as just getting rid of the fatigue and the fuzzy headedness, but if patients can just somehow balance their lives so that not every piece feels hampered by their disease, then I think that they may feel a little bit better about things overall. But again, I come back to the fact that nothing is as good as actually fixing the disease.

References

Canetta PA, Troost JP, Mahoney S, et al; CureGN Consortium. Health-related quality of life in glomerular disease. Kidney Int. 2019;95(5):1209-1224. doi:10.1016/j.kint.2018.12.018

 

Carter SA, Gutman T, Logeman C, et al; SONG-GD Investigators. Identifying outcomes important to patients with glomerular disease and their caregivers. Clin J Am Soc Nephrol. 2020;15(5):673-684. doi:10.2215/CJN.13101019

 

Carter SA, Logeman C, Howell M, et al. Development of an international Delphi survey to establish core outcome domains for trials in adults with glomerular disease. Kidney Int. 2021;100(4):881-893. doi:10.1016/j.kint.2021.04.027

 

Kwon CS, Daniele P, Forsythe A, Ngai C. A systematic literature review of the epidemiology, health-related quality of life impact, and economic burden of immunoglobulin A nephropathy. J Health Econ Outcomes Res. 2021;8(2):36-45. doi:10.36469/001c.26129

 

Lafayette RA, Libby S, Pannagl K, et al. Persistence of signs and symptoms in treated patients with C3 glomerulopathy (C3G): evidence from real-world data [abstract TH-PO646]. Abstract presented at: American Society of Nephrology Kidney Week 2023; November 1-5, 2023; Philadelphia, PA.

 

Lafayette RA, Pannagl K, Ndife BC, et al. Signs and symptoms at diagnosis in patients with C3 glomerulopathy: results from a real-world multi-country study [abstract PUB302]. Abstract presented at: American Society of Nephrology Kidney Week 2023; November 1-5, 2023; Philadelphia, PA.

 

Murphy SL, Mahan JD, Troost JP, et al; CureGN Consortium. Longitudinal changes in health-related quality of life in primary glomerular disease: results from the CureGN study. Kidney Int Rep. 2020;5(10):1679-1689. doi:10.1016/j.ekir.2020.06.041

 

 

This information is brought to you by Engage Health Media and is not sponsored, endorsed, or accredited by the American Society of Nephrology.

Carla M. Nester, MD, MSA, FASN

Jean Robillard Professor of Pediatric Nephrology
Division Director of Pediatric Nephrology, Dialysis, and Transplantation
University of Iowa Stead Family Children's Hospital
Iowa City, IA

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