Symptom Management in Kidney Disease: Integrating Kidney Supportive Care

Patients with advanced kidney disease can benefit from kidney supportive care as a core part of their nephrology care.

People living with chronic kidney disease (CKD) or kidney failure (end stage kidney disease, ESKD) experience high symptom burden, including unrelenting fatigue, pain, pruritis, insomnia, anxiety, and depression. These symptoms significantly affect patient quality of life and mortality. In fact, 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.

More can and should be done to relieve unnecessary suffering, starting with routinely assessing and managing symptom burden.

The Kidney Disease Improving Global Outcomes (KDIGO) Dialysis Symptom Burden report details the wide range of symptoms experienced by people receiving dialysis, from headaches and difficulty concentrating to depression and shortness of breath.

Several validated tools exist to carefully and adequately assess symptom burden, including the IPOS Renal and ESAS-Renal. The PHQ-9 is commonly used to assess depression, and the GAD-7 to assess anxiety, and the PHQ-4 can be used as a brief combined screening tool for 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.

Regardless of the symptoms we are treating, discussing expectations for treatment outcomes is important. A shared decision-making approach supports improved quality of life, so patients can continue to do what they enjoy. We also want to incorporate cultural, spiritual, religious, and age factors to provide individualized care.

Patients should understand that symptoms may not be able to be mitigated entirely. The goal is to achieve symptom control at a level the patient finds acceptable and make tradeoffs consistent with values and goals. For instance, we may not be able to remove all the pain but hope the pain control is at a reasonable level determined by the patient.

As shown in Figure 1, patients frequently report the following symptoms related to CKD or ESKD diagnosis. We have prepared this blog to provide guidance on non-pharmacologic and pharmacological management specific to patients with advanced kidney disease.

Fatigue is the most prevalent symptom in advanced kidney disease, affecting close to 95% of patients, and can be very debilitating at any stage of CKD. There are many different causes, so treatment should start with investigation, then lifestyle modification, and then pharmacological treatment. Patients should be encouraged to attempt exercise and maintain a healthy diet.

Other underlying causes of fatigue, such as sleep apnea, should be ruled out and/or treated appropriately. Encourage patients to adopt good sleep habits, including minimizing fluid intake and caffeine later in the day. They should avoid watching television or using electronic devices just prior to bedtime. A cool, dark room can promote restfulness and sleep. Patients should take breaks when needed but try to avoid daytime napping.

In addition, correcting diagnosed anemia with ESA, iron, B-12 and folate can improve fatigue. Treating metabolic acidosis may also improve quality of life. Medications may include melatonin, or short-term use of sedatives, if indicated. If depression or anxiety is present, treating those may improve fatigue and quality of life. Patients with anxiety can also keep a worry log or journal next to the bed and write down thoughts prior to sleep.

Pain is among the most prevalent symptoms in patients with CKD and occurs at much higher rates than in the general serious illness population, with one in two patients reporting pain. Almost half of those experiencing pain will rate it as moderate to severe. Untreated pain is associated with impaired quality of life, depression, insomnia, and for patients receiving dialysis, also associated with shortened or missed treatments and increased hospital or ER visits.

For people with CKD, pain generally falls into two categories: nociceptive pain (tissue damage) or neuropathic pain (nerve or sensory-related). The first step in managing pain is identifying its presence and identifying its cause. CAPC’s pain management curriculum provides comprehensive guidance on thorough pain assessment.

Discuss realistic expectations for pain management with your patient, emphasizing that pain will not disappear completely. The goal is to control pain to a level that the patient can function and maintain a quality of life that is acceptable to them. In addition to non-pharmacologic strategies such as physical therapy, exercise, massage, cognitive behavioral therapy, pharmacologic treatment may be indicated. In some circumstances, topical pharmacotherapy—such as topical NSAIDs for isolated joint pain or lidocaine cream or vapocoolant sprays for cannulation-related discomfort—may be helpful.

Systemic pharmacotherapy can follow the World Health Organization analgesic ladder, with acetaminophen or NSAIDs (in appropriate patients or for time-limited trials) for mild pain, and escalation to low-dose opioids for pain that is not responsive or is more severe.

Typically, medications that are avoided when kidney function is impaired include morphine, codeine, hydrocododne, tapentadol, meperidine and extended-release tramadol due to risk of metabolite accumulation and adverse effects. Preferred medications include hydromorphone, oxycodone, and short-acting tramadol. Start at the lowest dose and titrate slowly, since metabolism may be altered in the setting of impaired kidney function. Once on a stable pain regimen, longer-acting options including fentanyl patches may be considered; methadone can be prescribed by experienced providers.

Neuropathic pain, such as pain related to diabetes or chemotherapy, responds better to medications such as gabapentinoids, tricyclic antidepressants, SSRI, or NSRIs. Consider whether specific medications may address two symptoms; for example, gabapentin may benefit neuropathic pain as well as concurrent pruritus or restless legs syndrome.

Be mindful of dosing recommendations based on renal function to avoid adverse outcomes. Side effects should be considered and discussed with patients when developing and discussing treatment plans. Discuss follow-up plan with patients, including evaluation of efficacy based on improvement in severity score and quality of life factors, and tolerability/side effects, that may warrant dose or medication adjustments.

Depression and anxiety occur among 20-40% of the kidney population and are three times more prevalent than in the general population. Clinicians should screen for anxiety and depression in their regular assessment and treatment plan. Patients with depression and anxiety report higher levels of pain and poorer quality of life; these co-morbidities are also associated with increased mortality rates in adults with CKD.

Non-pharmacologic management for both anxiety and depression include cognitive behavioral therapy with a mental health professional; progressive muscle relaxation; grounding techniques, mindfulness and meditation practices; and exercise. Journaling and use of worry logs may also help reduce anxiety.

If non-pharmacological treatment is not effective or additional support is needed, antidepressants may provide modest, sometimes statistically significant improvement. These include SSRIs such as citalopram, escitalopram, fluoxetine, and sertraline. Sertraline has been studied the most in renal disease. Typically starting with a dose of 25 mg daily and titrating up to a dose of 200 mg daily as tolerated, can improve both anxiety and depression. KDOQI recommends additional studies to evaluate SSRI efficiency in the dialysis population. Leaning on the mental health members of the interprofessional team, such as social work, psychology, spiritual care, and/or psychiatry, is valuable for this population, in particular.

Patients with CKD or ESKD often report fear and trauma related to diagnosis, disease burden, changes in health and lifestyle, and uncertainty about the future. Strong communication skills can help alleviate some anxiety related to CKD or ESKD. Clinicians should approach prognostication and treatment option discussions honestly, using a shared decision-making approach.

Trauma is a response to a perceived threat. The goal is not to “treat” trauma, but to avoid re-traumatization and create an environment of safety and healing. Utilizing trauma-informed care principles, clinicians can provide privacy, explain everything, offer choice when possible, and encourage self-management. Principles of safety, trust, choice, collaboration, and empowerment supports patients through all stages of CKD and improve overall well-being and quality of life. Trauma-informed care can also support patients transitioning to kidney transplantation, dialysis therapies, or conservative care/active medical care without dialysis.

Restless legs syndrome (RLS) is often described as an unpleasant sensation in the legs associated with the irresistible urge to move them, often worsening in the evening or during periods of inactivity. Its prevalence increases with CKD stage and it’s estimated that roughly 30% of patients on dialysis experience RLS and its significant impact on quality of life. It can be associated with poor sleep and depression and is often associated with periodic limb movement disorder (PLM). Interestingly, RLS improves post kidney transplantation.

While the cause of RLS is not fully understood, associations include anemia, iron deficiency, concurrent peripheral neuropathy, sensorimotor activation, and antidepressant use (e.g., tricyclics, SSRIs).

Diagnostic criteria are outlined in the boxes below, with treatment including both non-pharmacologic and pharmacologic therapy. Initial management includes optimizing sleep hygiene, limiting alcohol and caffeine, and treating associated symptoms (e.g., obstructive sleep apnea, depression). Review medications that may worsen RLS symptoms—such as domperidone, metoclopramide, nortriptyline, haloperidol, and risperidone—and consider discontinuing if possible. Evaluate and treat iron deficiency anemia.

Non-pharmacologic approaches include a cool dialysate for patients receiving hemodialysis, aerobic exercise (including intradialytic), aromatherapy massage, reflexology, accupoint therapy, and neuromuscular electrical stimulation. Unfortunately, access may be limited due to health insurance restrictions, availability, time, and finances.

Pharmacologic therapy includes a2d ligands such as gabapentin and pregabalin. Dopamine agonists (e.g., pramipexole, ropinirole, rotigotine) have limited use due to side effects, including worsening impulse control disorders with chronic use, and in some cases have been described to worsen RLS symptoms. However, they may be preferred over gabapentinoids in select patients without behavioral risk factors for impulsivity who may also have severe depression, opioid dependence, or gait instability. Always consider potential medication interactions and side effects.

Sexual dysfunction is more common in men and woman living with CKD than in the general population and often improves following renal transplantation. Women may experience difficulty with arousal or dyspareunia, in addition to other symptoms. Men describe symptoms including decreased libido and erectile dysfunction (ED), the latter increasing with age and CKD stage, and affects approximately 50% of men with CKD and 80% of men receiving dialysis.

Contributing factors include hormonal changes, mineral bone disease, psychosocial factors, neuropathy, medications and comorbid conditions. Sexual dysfunction can impair quality of life, cause anxiety, loss of self-esteem, and poor self-image, and create marital conflict, so it should be taken seriously.

PDE5 inhibitors have been shown to be effective, though their safety profile is not well described due to limited research. An individualized approach should be used, with consideration of contraindications and factors that increase risk. Oral zinc has also been evaluated, with some studies suggesting improvement in symptoms, though evidence is limited.

Patients with advanced kidney disease experience distressing symptoms much more often than the general population, and also those with other serious illnesses.

Clinicians should routinely ask patients about their symptoms, listen actively, and use shared decision-making for symptom management, with follow up to ensure treatment effectiveness and goal alignment.

All clinicians caring for patients with kidney disease should use validated tools for physical and psychosocial symptom assessment, rather than assuming we know what the patient is going through, or how severe their symptoms may be.

Many patients will experience multiple symptoms, and management of one may have side effects that impacts treatment of another. A review of all medications a patient is taking should be conducted whenever prescribing a new medication to evaluate potential interactions or side effects that may be contributing to a specific symptom. Non-pharmacological treatments and medications can be carefully combined to enhance quality of life across several areas of need.

If you are interested in learning more about integrating palliative care into your nephrology practice, we recommend the curated resources below:

• The Case for Palliative Care in Kidney Care, a joint publication from CAPC and the National Kidney Foundation (NKF), emphasizing the critical need to integrate palliative care services into the treatment of patients with advanced kidney disease.
• CAPC's Nephrology Learning Pathway, which includes continuing education courses and other resources to strengthen communication, manage common symptoms, and integrate palliative care practices and specialists in patient treatment.
• Rethinking Kidney Care: The Role of Conservative Kidney Management, a recent blog covering the ins and outs of conservative kidney management (CKM), including how to identify candidates for this treatment option, the role of shared decision-making, strategies for navigating critical conversations with patients, and more.