Winning With Kidney Diseases Depends on How You Feel

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As the summer season draws to an end for many of us, I am sure that you, like me, were captivated by the Summer Olympic and Paralympic Games in Paris, France. Whether rooting for our compatriots to make it onto the medal stand or binge-watching events we never knew were included in the Olympics—in my case, that was skateboarding—Paris 2024 was a great source of inspiration and wonder for us all.

I was particularly inspired by the story of Sunisa “Suni” Lee, a gymnast on Team U.S.A. Known for high-flying, dazzling performances, Lee earned two bronze medals in individual events (uneven bars and the all-around competition) and a gold medal in the team finals. But perhaps her greatest recent victory was one much more familiar to those of us in the kidney community. Before this summer's competition, Lee shared that early in 2023, as a college sophomore, she woke up one day to find that “nearly her entire body was swollen” (1). She was subsequently diagnosed with two forms of kidney diseases said to be “rare” and “incurable” (1, 2). Following treatment, Lee's recovery has been remarkable, as we were able to glean from her outstanding performance at the Olympics. And she is not the only athlete known to have faced kidney diseases either prior, during, or after their professional or Olympic careers (Table).

Table

Examples of athletes who have lived with kidney diseases

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When I hear of extraordinary things that athletes and other people with kidney diseases do and their stories of overcoming setbacks due to their conditions, I often try to imagine what it took for them to feel well enough to accomplish amazing things. How did they overcome the common symptoms, such as insomnia, fatigue, cramping, and anxiety, that many people living with kidney diseases experience (3, 4)? What can be done to support others who also want to feel well enough to “win” with kidney diseases?

Patient-reported outcome measures are validated questionnaires that have been developed for patients to report directly how they are feeling and how well they are functioning in their daily lives. Such measures focus on their health conditions and the associated treatments, bypassing interpretation of their responses by clinicians or other members of the health care teams (5). When first developed, patient-reported outcomes were primarily used in research studies. However, over the past quarter-century, with the advent of more widespread use of electronic health records and digital health technologies, patient-reported outcomes are now being incorporated into patient self-management and clinical care delivery.

The use of patient-reported outcomes has led to some favorable traditional (or “hard”) clinical endpoints. In a randomized clinical trial in oncology, for example, the addition of electronic patient-reported symptom monitoring into the routine care of patients with metastatic cancer resulted in better survival as compared with usual care (6). The investigators noted that one potential driver of the survival benefit of participants in the symptom-monitoring arm of this trial was that they were more likely to receive early responses from health professionals to their symptoms that could have prevented downstream adverse events.

Apart from annual assessments such as the Kidney Disease Quality of Life 36 (KDQOL-36), which is mandated by the Centers for Medicare & Medicaid Services as a condition of coverage for dialysis facilities under the Medicare program (7), patient-reported outcomes are not routinely measured in US kidney care. And they are especially underutilized for people with kidney diseases not requiring dialysis. Although valid and reliable measures exist for adult and pediatric patients with kidney diseases (8–10), patient-reported outcome measures would need to be incorporated into care workflows to fully reap the potential benefits of their routine assessment, while also both addressing barriers to their completion by people living with kidney diseases and barriers to reviewing and acting on symptom burden by nephrologists and other clinicians (11, 12).

We could expect that people with higher literacy, greater comfort in navigating electronic patient portals, and those who are more at ease with other platforms would be more likely to complete patient-reported outcome measures. As such, it would be imperative to ensure that their application does not worsen disparities regarding who receives high-quality kidney care. I could imagine, and I actively hope though, that by standardizing these sorts of measures and providing assistance in completing them where needed (e.g., over the telephone or while in the clinic waiting room), patient populations who are historically marginalized might derive significant benefits. For example, symptom assessment via patient-reported outcome measures might allow for more timely identification of people approaching a need for initiation of kidney replacement therapy, which could have implications for mitigating disparities in referral for vascular access surgery and referral for transplantation, among other care processes.

A looming question, however, is if we were to routinely assess patient-reported outcomes in kidney care, as some experts have endorsed, do we have the ability to alleviate the symptoms that patients would report? Can we actually help people to feel better? I am encouraged by clinical trials demonstrating the effectiveness of both some nonpharmacologic (e.g., acupuncture for uremic pruritus [13]) and pharmacologic (e.g., melatonin for sleep disturbances [14]) therapies in the treatment of some common symptoms experienced by people with kidney diseases, yet significant evidence gaps remain (15). These gaps can and should be addressed by greater investment in clinical trials including patient-reported outcomes as endpoints.

It is equally important to recognize those like Lee who use their platforms to raise awareness about kidney diseases. ASN awards the President's Medal to individuals who have helped advance the society's mission to create a world without kidney diseases by educating and informing, driving breakthroughs and innovation, and advocating for policies that create transformative changes in kidney medicine throughout the world. Recent recipients of the ASN President's Medal include photojournalist Ed Kashi; actor and comedian George Lopez; former member of Congress Jim McDermott, MD; and Griffin P. Rodgers, MD, who directs the National Institute of Diabetes and Digestive and Kidney Diseases of the National Institutes of Health.

On Thursday, October 24, 2024, I will recognize Alonzo Mourning with the ASN President's Medal. ASN's members, leadership, staff, and I sincerely appreciate how Mourning has leveraged his platform as a world-famous athlete and applied his lived experience to raise awareness about kidney diseases. I am particularly inspired by the impact of his efforts on communities disproportionately affected by kidney diseases, including Black Americans. Through remarkable advocacy on behalf of people living with kidney diseases, he has contributed meaningfully to the kidney community and helped advance ASN's mission.

Not every person with kidney diseases will win Olympic medals like Suni Lee or become a member of the Naismith Memorial Basketball Hall of Fame like Alonzo Mourning. The same can be said of us mere mortals who are neither Olympians nor professional athletes, despite not living with kidney diseases. What is important is that we help everyone feel like winners, and that starts with understanding the day-to-day experiences of people living with kidney diseases and helping them alleviate the symptoms that concern them most.