People with advanced kidney disease experience severe symptom burden rivaling cancer patients, yet receive far less pain management.
People with end-stage kidney disease (ESKD) report higher symptom burden than patients undergoing chemotherapy, yet receive significantly less pain and symptom management. This gap in care is driving nephrologists to advocate for routine symptom assessment as a core part of kidney disease treatment, using validated screening tools and individualized management strategies to improve quality of life.
What Symptoms Are Kidney Disease Patients Actually Experiencing?
The burden of living with chronic kidney disease (CKD) or kidney failure extends far beyond what most people realize. According to the Kidney Disease Improving Global Outcomes (KDIGO) Dialysis Symptom Burden report, patients experience a wide range of debilitating symptoms that significantly impact their daily lives and mortality rates.
The most common symptoms reported by kidney disease patients include:
- Fatigue: Affects close to 95% of patients with advanced kidney disease and can be extremely debilitating at any stage of CKD
- Pain: Occurs in one in two patients with CKD at much higher rates than in the general serious illness population, with almost half rating it as moderate to severe
- Pruritus (itching): A persistent and often distressing symptom affecting quality of life
- Insomnia: Sleep disruption that compounds fatigue and other symptoms
- Anxiety and depression: Present in 20-40% of the kidney population, three times more prevalent than in the general population
- Additional symptoms: Headaches, difficulty concentrating, shortness of breath, and restless legs syndrome
The comparison to cancer patients is striking. "Many patients with ESKD suffer greater symptom burden than patients with cancer who are receiving chemotherapy, yet they are far less likely to receive pain and symptom management," according to clinical guidance from the Center to Advance Palliative Care. This disparity represents a significant gap in how we approach kidney disease care.
Why Is Symptom Management Being Overlooked in Kidney Care?
Despite the severity of symptoms, routine assessment and management remain inconsistent across nephrology practices. Untreated pain in kidney disease patients is associated with impaired quality of life, depression, insomnia, and for dialysis patients specifically, shortened or missed treatments and increased hospital or emergency room visits.
The solution begins with systematic screening. Several validated tools now exist to carefully assess symptom burden in kidney patients, including the IPOS Renal and ESAS-Renal scales. For depression specifically, clinicians use the PHQ-9, while the GAD-7 assesses anxiety. The PHQ-4 can serve as a brief combined screening tool for both anxiety and depression.
Ideally, symptoms should be assessed at each outpatient clinic visit, typically every three months, or every one to three months for patients receiving dialysis, with more frequent assessment based on individual patient needs.
How to Manage Kidney Disease Symptoms Effectively
Managing symptoms in kidney disease requires a personalized approach that combines lifestyle modifications, non-pharmacologic strategies, and carefully selected medications. Here's what evidence-based management looks like:
- Fatigue management: Start with investigation of underlying causes like sleep apnea, then implement lifestyle modifications including regular exercise, healthy diet, good sleep hygiene (minimizing fluid and caffeine later in the day, avoiding screens before bed, maintaining a cool dark room), and treating anemia with erythropoiesis-stimulating agents (ESA), iron, B12, and folate supplementation
- Pain management: Identify the type of pain (nociceptive from tissue damage or neuropathic from nerve damage), then use non-pharmacologic strategies like physical therapy, exercise, massage, and cognitive behavioral therapy, followed by topical treatments (such as lidocaine cream for cannulation discomfort) or systemic medications following the World Health Organization analgesic ladder
- Neuropathic pain treatment: Use gabapentinoids, tricyclic antidepressants, SSRIs (selective serotonin reuptake inhibitors), or SNRIs (serotonin-norepinephrine reuptake inhibitors), which respond better to these medication classes than standard pain relievers
- Depression and anxiety care: Implement cognitive behavioral therapy with mental health professionals, progressive muscle relaxation, grounding techniques, and mindfulness practices, with pharmacologic treatment as needed
- Medication selection for kidney patients: Avoid morphine, codeine, hydrocodone, tapentadol, meperidine, and extended-release tramadol due to metabolite accumulation risks; prefer hydromorphone, oxycodone, and short-acting tramadol, starting at lowest doses and titrating slowly
A critical principle in kidney disease symptom management is setting realistic expectations. "The goal is to achieve symptom control at a level the patient finds acceptable and make tradeoffs consistent with values and goals," according to clinical experts. This means patients should understand that symptoms may not disappear entirely, but rather be controlled to a level where they can function and maintain quality of life acceptable to them.
The approach should incorporate cultural, spiritual, religious, and age factors to provide truly individualized care. Shared decision-making between patients and clinicians supports improved outcomes, allowing patients to continue doing what they enjoy despite their kidney disease.
Is Universal Kidney Disease Screening the Answer?
While symptom management addresses the needs of diagnosed patients, a parallel conversation is emerging about whether we should be catching kidney disease earlier through universal screening. Historically, diseases eligible for population screening must meet three criteria: be a significant health problem with serious consequences if untreated, be detectable in early stages, and have effective treatments available.
Chronic kidney disease now checks all three boxes. It affects almost 800 million people globally and is the ninth leading cause of death and twelfth leading cause of disability. Convenient and inexpensive blood and urine tests can detect it early, well before symptoms appear. And recent treatment advances—including sodium-glucose cotransporter-2 (SGLT2) inhibitors and nonsteroidal mineralocorticoid receptor antagonists (MRAs)—have been shown to significantly slow CKD progression and reduce rates of kidney failure, cardiovascular death, and hospitalization.
However, barriers remain. Current screening guidelines recommend testing only for patients with risk factors like diabetes, hypertension, cardiovascular disease, or family history of kidney disease. Even among these high-risk groups, screening is inconsistent: studies show only 40% of patients with diabetes and 23% of those with hypertension receive recommended urine albumin testing annually.
"When I became aware in more detail about the prevalence, the mortality, and the trends around chronic kidney disease, I was shocked about the lack of efforts in prevention. All the efforts were going predominantly toward dialysis and somewhat toward transplantation," said Dr. Salvatore Giovanni Viscomi, cofounder and chief executive officer of Carna Health, a company focused on increasing CKD prevention, detection, and treatment.
The shift from late-stage treatment to prevention represents a fundamental change in how we approach kidney disease. Rather than waiting for patients to reach dialysis or transplantation, early detection combined with effective medications and symptom management could dramatically improve outcomes and quality of life for millions of people worldwide.
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