Researchers asked over a hundred people living with CKD about their experiences, perspectives, fears, and what they want to know about their disease and prognosis.
Prognostic information—insights into what the future might look like with a disease—can help people living with chronic kidney disease (CKD) plan ahead and make informed decisions about their care. While it’s clear that many CKD patients want a better understanding of how their disease might progress, a recent study took a closer look at how patients actually feel about the future, and what types of information they find most helpful.*
By analyzing open-ended responses from 163 people living with CKD, researchers identified three key themes: how people emotionally respond to thoughts of their future, what kinds of information they want (or don’t want), and what this means for how healthcare professionals talk about prognosis in everyday care.
Not surprisingly, the way people feel about their future with CKD varies a lot. Many participants described feeling uncertain, anxious, or even sad—especially when thinking about:
Some worried about losing independence or about symptoms getting worse over time. These emotions were often difficult—but they also sometimes inspired people to take action, like improving their self-care routines, making healthier choices, or seeking out more information.
Other participants described a more neutral or accepting view of their future. For these individuals, CKD had become a manageable part of life, particularly when their condition was stable. They focused on what they could control and made peace with the physical limitations they faced.
The study found that people’s preferences for information were just as varied as their emotional reactions. Many patients said they wanted detailed, personalized insights about what to expect, including:
This type of information helped them feel more in control and better prepared for what might come next. It also eased some of the anxiety that often comes from the unknown.
Others were eager for practical advice—like how to slow down the disease through changes in diet, exercise, or daily habits. Some were curious about innovations in treatment, such as wearable dialysis devices or less invasive procedures.
Not everyone wanted this level of detail, however. A smaller group said they preferred not to focus on the future. Some felt they already had the information they needed; others said they’d rather live in the present and avoid the emotional toll of too much prognostic detail.
The study highlights a key message for healthcare teams: conversations about prognosis should be flexible, empathetic, and guided by the patient’s individual needs and emotional readiness.
Some people want as much information as possible. Others are more comfortable with general guidance or prefer to wait until they’re emotionally ready. That’s why it’s essential for healthcare professionals to ask patients directly—what do you want to know, when do you want to know it, and how do you want that information delivered?
It’s not just about facts and figures. Talking about the future can bring up a lot of emotions. Making room for those feelings, and responding with empathy, can strengthen trust and help patients feel more involved in their care.
A combination of provider empathy and patient self-advocacy can result in improved communication, care, and outcomes.
If you are living with CKD, do you agree with these findings? Share with us what’s important to you!
*Milders, J., Mueleman, Y., Ramspek, C. L., Bos, W. J. W., et al. (2025, July 1). Living with chronic kidney disease: future perspectives and prognostic needs of patients – a qualitative study. BMC Nephrology. https://bmcnephrol.biomedcentral.com/articles/10.1186/s12882-025-04243-8
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