Abstract

Patients with chronic kidney disease (CKD) frequently experience unpleasant symptoms. These can be gastrointestinal (constipation, nausea, vomiting and diarrhoea), psychological (anxiety and sadness), neurological (lightheadedness, headache and numbness), cardiopulmonary (shortness of breath and oedema), dermatological (pruritus and dry skin), painful (muscle cramps, chest pain and abdominal pain) or involve sexual dysfunction, sleep disorders and fatigue. These symptoms often occur in clusters, with one of them as the lead symptom and others as secondary symptoms. Uraemic toxins (also called uremic toxins) are often considered to be the main cause of CKD-associated symptom burden, but treatment of uraemia by dialysis often fails to resolve them and can engender additional symptoms. Indeed, symptoms can be exacerbated by comorbid conditions, pharmacotherapies, lifestyle and dietary regimens, kidney replacement therapy and ageing. Patients with kidney disease, including those who depend on dialysis or transplantation, should feel actively supported in their symptom management through the identification and targeting of unpleasant symptoms via a tailored palliative care approach. Such an approach may help minimize the burden and consequences of kidney disease, and lead to improved patient outcomes including health-related quality of life and better life participation.

Highlights

  • Abstract | Patients with chronic kidney disease (CKD) frequently experience unpleasant symptoms

  • Our fundamental understanding and prioritization of symptom management in nephrology has been overshadowed by the multitude of technical and biomedical aspects of CKD pharmacotherapies, dialysis treatment approaches and kidney transplantation, as well as the erroneous assumption that interventions for uraemia, such as kidney replacement therapy, improve symptoms sufficiently to negate the need for additional interventions to alleviate symptoms

  • In this Perspective, we examine the concept and scope of symptom burden in CKD; theoretical frameworks and constructs for symptom science; biological mechanisms underlying some of the unpleasant symptoms associated with CKD; validated tools for symptom appraisal and assessment; and strategies for symptom management, including palliative care approaches for patients with CKD under conservative management or receiving kidney replacement therapy

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Summary

Symptom science

A ‘symptom’ is defined as a self-reported or subjective perception of an individual’s experience of a physical disturbance or disease. Symptom science focuses on symptom experiences, rather than diseases and illnesses, and is becoming increasingly important as the lifespan of individuals with multiple chronic illnesses increases with the use of life-sustaining interventions, such as dialysis[7]. Living with these illnesses includes the management of the symptoms that accompany them. A ‘symptom cluster’ is defined as three or more unpleasant symptoms that occur together and may be related through a common aetiology or mechanism, shared variance or a common outcome One such example is the depression–fatigue–pain symptom cluster that has been described in patients with cancer[15,16]. Multimorbid conditions live longer and are more likely to develop symptom clusters, the field of symptom science is expected to gain recognition as an approach to improving health-related quality of life[19]

Symptom burden from kidney disease
Unpleasant symptoms
Advanced CKD
Worsening uraemic symptoms
Theoretical frameworks
Dry skin
Suggested palliative and management interventions
Sexual dysfunction
Gum and dental health interventions
Symptom management strategies
Pathophysiology of CKD symptoms
Translocation of proinflammatory cytokine and endotoxins
Tools for symptom appraisal in CKD
Integrated Palliative Care Outcome Scale Renal
Management of unpleasant symptoms in CKD
Findings
Conclusions
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