Figure 1Survey results of 4807 people with CKD from 7 member centers of the IFKF–WKA carried out at the beginning of 2021. This survey assessed the frequency of the most common∗ physical, psychological, and life effects on people with CKD.
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Table 1Living well with kidney disease and effective symptom management consensus conference recommendations
CKD, chronic kidney disease; HRQOL, health-related quality of life; KDRD, kidney dysfunction requiring dialysis.
Perspectives on Symptom Burden From People With CKDAs kidney disease progresses, affected persons experience an increasing burden of adverse uremic symptoms.3Kalantar-Zadeh K. Lockwood M.B. Rhee C.M. et al.Patient-centred approaches for the management of unpleasant symptoms in kidney disease. These symptoms can impair their health-related quality of life (HRQOL) by interfering with social relationships, causing financial instability, and contributing to overall poor well-being.3Kalantar-Zadeh K. Lockwood M.B. Rhee C.M. et al.Patient-centred approaches for the management of unpleasant symptoms in kidney disease. In order to identify approaches to person-centered symptom management that optimize HRQOL, it is important to understand the preferences, priorities, and individual needs of persons with CKD.At the consensus conference, Siu-Fai Lui, MD, the current president of the IFKF–WKA, presented results from a worldwide survey conducted in early 2021, of 4807 people with CKD from 7 member centers of the IFKF–WKA (Bangladesh, Hungary, Italy, India Tanker Foundation, India Renal Foundation, Hong Kong, and Malaysia). The survey assessed well-being using a 10-point scale (a score of 1 equated to “not well” and a score of 10 equated to “very well”), and the frequency of physical, psychological, and life effects on people with CKD (Figure 1).4Patient engagement: what matters to patients. The average overall score for well-being across member nations ranged from 5.8 in Bangladesh to 6.8 in Malaysia, suggesting that there is scope to improve well-being in CKD. The most common physical effects reported were fatigue and sleep problems (each reported in the top 5 physical effects at all 7 centers), and pruritus (reported in the top 5 physical effects at most centers) with fatigue being the most impactful physical symptom reported across all of the countries and foundations surveyed (reported by 55%–71% of respondents). The most common psychological effects reported included concerns about the future, anxiety, stress, and depression (each reported in the top 5 psychological effects at all 7 centers), and the most common life effects included financial, ability to work, ability to travel, and lifestyle changes (each reported in the top 5 life effects at most centers). Additionally, Maurizio Gallieni, MD presented views he gathered from Italian people with CKD through the Facebook groups “Emodialisi Domiciliare: questa sconosciuta!,” (“Home Hemodialysis: the unknown!”); “#Dialisi Peritoneale,” (“Peritoneal Dialysis”); and “Emodializzati e Trapiantati di Rene!,” (“Hemodialyzed and Kidney Transplanted!”). These perspectives highlighted the burden of symptoms, as well as the importance of psychological and social support, logistics, communication, and access to information in coping with unpleasant symptoms (Table 2, selected key quotes have also been included within relevant sections of this article). These life effects and sequelae of symptom burden were also echoed by consensus conference attendees with CKD, underscoring the shared experiences of people with CKD globally.CKD, chronic kidney disease; IFKF–WKA, International Federation of Kidney Foundations–World Kidney Alliance.
Mean average frequencies calculated from available data: pruritus (n = 5 centers), and life effects (n = 6 centers each).
∗Most common effects were those reported within the top 5 effects at most centers: the most common physical effects reported were fatigue and sleep problems (each reported in the top 5 at all centers), and pruritus (reported in the top 5 at most centers); the most common psychological effects were concern about the future, anxiety, stress, and depression (each reported in the top 5 at all centers); the most common life effects were financial, ability to work, ability to travel, and lifestyle changes (each reported in the top 5 at most centers). Figure created based on data presented at the consensus conference by Siu-Fai Lui, MD.
Table 2Perspectives on whether the health care system meets their needs and what improvements could be made gathered from people with chronic kidney disease through the Facebook groups “Emodialisi Domiciliare: questa sconosciuta!,” (“Home Hemodialysis: the unknown!”) “#Dialisi Peritoneale,” (“Peritoneal Dialysis”) and “Emodializzati e Trapiantati di Rene!” (“Hemodialyzed and Kidney Transplanted!”) in November 2021
Table created from patient perspectives gathered, translated, and presented at the consensus conference by Maurizio Gallieni, MD. Quotations have been included with permission.
Importantly, there has been an exciting change in attitude among clinicians and investigators, with accompanying growing interest among major nephrology journals, to recruit and include voices that reflect the needs of people with CKD.5Gedney N. Sipma W. Sondergaard H. Innovations in dialysis: the user’s perspective.,6Brown K.D. Campbell C. Roberts G.V. Precision medicine in kidney disease: the patient’s view. Consequently, people with CKD have identified symptom management as a high priority area, even prioritizing alleviation of symptoms over other health outcomes such as survival and biochemical indices.7Manns B. Hemmelgarn B. Lillie E. et al.Setting research priorities for patients on or nearing dialysis.,8Flythe J.E. Hilliard T. Lumby E. et al.Fostering innovation in symptom management among hemodialysis patients: paths forward for insomnia, muscle cramps, and fatigue. A key message from consensus conference attendees with CKD was that quality of life supersedes quantity of life. Advocacy group leaders highlighted that symptom burden has a major effect on quality of life, and whereas there has traditionally been greater emphasis on clinical outcomes as an index of quality of care, this metric may not necessarily reflect experiences of people with CKD. Multiple conference participants noted that in current clinical practice, symptoms may be under-recognized, underestimated and consequently undertreated in people with CKD. Although routine standardized symptom assessment is an important tool to optimize quality of care,9Zarantonello D. Rhee C.M. Kalantar-Zadeh K. Brunori G. Novel conservative management of chronic kidney disease via dialysis-free interventions. symptoms may be vague, difficult to quantify and distinguish from non-CKD symptoms, and may subsequently be downplayed by clinicians over time. Therefore, a holistic approach to symptom evaluation and management is needed that also considers genetic or biological (omics), behavioral, and environmental factors, as well as social determinants of health.Recommendations for CliniciansIn order to optimally treat the unpleasant symptoms associated with CKD, clinicians, and consensus conference attendees with CKD agreed that it is crucial for clinicians to:•Engaging the person with CKD: ask them what is troubling or concerning them, keeping in mind that they are unlikely to ever be “symptom free”;
•Listen to the person with CKD: identify and investigate the underlying causes of symptoms reported by them;
•Appreciate what matters most to the person with CKD: understand their “why,” i.e., focus on each person’s values, goals, and individual needs, which may be central to motivating them to pursue optimal health in lieu of solely emphasizing clinical outcome measures, such as laboratory results;
•Consider and discuss all treatment options and their implications with the person with CKD: this should include both benefits and potential risks of treatment, as well as person-centered approaches to effectively manage symptoms;
•Ensure optimized treatment for the individual person with CKD: be sure that the person with CKD feels comfortable with the treatment and trusts those treating them; align treatment needs with the aspirations of the person with CKD to minimize the effect their condition has on their quality of life;
•Understand that there are emotional and psychological effects of CKD, in addition to physical sequelae: clinicians should remember that each person with CKD has a network of family and friends, and clinicians should consider the wider effect of CKD on the people they treat. How is CKD changing or interfering with the person with CKD and their family?
Importance of Communication and Shared Decision-MakingKey inter-related themes discussed at the consensus conference included the prioritization of both communication and shared decision-making. In terms of communication, attendees agreed that clear, honest, and open dialogue between clinicians and the people they treat enables them to partner together to identify optimal treatment strategies and person-centered solutions. Advocacy group leaders also underscored that the following are imperative: (i) the person with CKD feels supported in selecting the “right” clinician(s) for their individual needs and preferences (i.e., those who will listen to them, believe them, and advocate on their behalf), and that (ii) communication between the clinician and the people they treat should be ongoing throughout the journey of the person with CKD (occurring before, during, and after treatment), with progress and treatment choices periodically revisited as the goals, preferences, and conditions of the person with CKD evolve over time.
In terms of shared decision-making, attendees agreed that a holistic approach is required to address the physical, mental, and emotional needs of persons with CKD, and should leverage the expertise of multidisciplinary professionals across different fields. Furthermore, attendees emphasized that this care team should include the person with CKD themself and give them a central role and voice in their shared decision-making. Finally, given that various aspects of CKD may require multidisciplinary care, advocacy group leaders highlighted the following: (i) the importance of communication among the involved healthcare professionals to ensure optimal care, and (ii) the critical role that healthcare professionals and “navigators” may have in guiding people with CKD across an increasingly complex health care system. For example, greater access to case managers and other types of “advocates” could help address a major unmet need in care coordination. Clinician time with those they treat may be limited, in part, by the emphasis on laboratory findings and comorbidities. Thus, running dedicated symptom management clinics for people with high symptom burden and/or using validated instruments to assess patient-reported outcome measures completed before or in-between clinic visits may be highly efficient methods for bringing greater attention to symptom burden, HRQOL, and other person-centered outcomes.
Unpleasant Symptoms and Symptom Clusters in CKD“Sleep deprivation, pain, itch, fatigue, psychological problems are considered inevitable aspects of dialysis treatment and are often not addressed,”
perspective from a person with CKD (Table 2).“Unpleasant” symptoms are symptoms that are a cause of subjective suffering for people with CKD or their care-partner(s) that adversely affects their HRQOL and for which they often seek effective management.3Kalantar-Zadeh K. Lockwood M.B. Rhee C.M. et al.Patient-centred approaches for the management of unpleasant symptoms in kidney disease. CKD-associated pruritus is an example of an unpleasant symptom.CKD-associated PruritusUremic pruritus or CKD-associated pruritus is defined as chronic itching observed in people with CKD who have significant abnormal kidney function and advanced stages of kidney damage: this is a diagnosis of exclusion.10Reszke R. Szepietowski J.C. End-stage renal disease chronic itch and its management. The Dialysis Outcomes and Practice Patterns Study I/II studies found chronic itching to have a lifetime prevalence of 35% in people with CKD on hemodialysis.11Weiss M. Mettang T. Tschulena U. et al.Prevalence of chronic itch and associated factors in haemodialysis patients: a representative cross-sectional study. This symptom may be under-appreciated by clinicians due to a lack of awareness of how frequently people with CKD are bothered by pruritus and consequently inadequately managed.12Rayner H.C. Larkina M. Wang M. et al.International comparisons of prevalence, awareness, and treatment of pruritus in people on hemodialysis.,13Weisbord S.D. Fried L.F. Mor M.K. et al.Renal provider recognition of symptoms in patients on maintenance hemodialysis. Whereas, most (84%–91%) people with CKD have mild or moderate itching intensity, 9 to 16% experience severe or very severe itching.11Weiss M. Mettang T. Tschulena U. et al.Prevalence of chronic itch and associated factors in haemodialysis patients: a representative cross-sectional study.,14Heisig M. Reich A. Szepietowski J.C. Is uremic pruritus still an important clinical problem in maintenance hemodialysis patients?. People with CKD and severe itching were found to be more likely to miss hemodialysis sessions than those without itching,15Ramakrishnan K. Bond T.C. Claxton A. et al.Clinical characteristics and outcomes of end-stage renal disease patients with self-reported pruritus symptoms. and those who missed hemodialysis were more likely to have poor outcomes.16Al Salmi I. Larkina M. Wang M. et al.Missed hemodialysis treatments: international variation, predictors, and outcomes in the Dialysis Outcomes and Practice Patterns Study (DOPPS).People with CKD-associated pruritus may additionally experience psychosocial burden resulting from interference with sleep, including induction, waking, duration and quality, which may then adversely affect their quality of life14Heisig M. Reich A. Szepietowski J.C. Is uremic pruritus still an important clinical problem in maintenance hemodialysis patients?. and survival.17Pisoni R.L. Wikstrom B. Elder S.J. et al.Pruritus in haemodialysis patients: international results from the Dialysis Outcomes and Practice Patterns Study (DOPPS). Advocacy group leaders at the consensus conference emphasized that the symptom of itching is a high-priority area. Both clinicians and people with CKD agreed that clinicians should routinely ask the people they treat about the presence of unpleasant symptoms, particularly chronic itching. Moreover, there should also be assessment of the effect of symptom burden, such as, “How does itching affect your daily life?”.Nondialysis Treatment of CKD-associated PruritusThe pathology of CKD-associated pruritus is complex and multifactorial, and may act via opioid receptor pathways.18Wieczorek A. Krajewski P. Koziol-Galczynska M. Szepietowski J.C. Opioid receptors expression in the skin of haemodialysis patients suffering from uraemic pruritus. Therapies for CKD-associated pruritus include emollients, ultraviolet B phototherapy, electroacupuncture, gabapentin or pregabalin, nalfurafine or nalbupine, mirtazapine or sertraline,10Reszke R. Szepietowski J.C. End-stage renal disease chronic itch and its management.,19Mettang T. Pruritus in renal disease. In: Carstens E, Akiyama T, eds. Itch: Mechanisms and Treatment: Boca Raton (FL); 2014.
as well as difelikefalin. Difelikefalin is a kappa opioid-receptor agonist and the first drug approved by the US Food and Drug Administration and the European Commission specifically for the treatment of moderate-to-severe pruritus associated with CKD in adults undergoing hemodialysis.20Vifor PharmaPeople living with CKD are required to make ongoing psychological adjustments over the course of their disease, which can be stressful and overwhelming, and may contribute to depression and anxiety. As noted earlier, results from a survey of people with CKD from 7 member centers of the IFKF–WKA showed that people with CKD commonly have concerns about the future, and may suffer from anxiety, stress, and depression. Consensus conference attendees with CKD emphasized that the psychological symptoms of kidney disease carry equal weight to physical symptoms, and that a positive and supportive management approach that also extends to the care partners of people with CKD is needed.
Depression and AnxietyDepression and anxiety are common in ESKD, affecting 20 to 50% and 12 to 52% of people with ESKD, respectively.30Feroze U. Martin D. Kalantar-Zadeh K. et al.Anxiety and depression in maintenance dialysis patients: preliminary data of a cross-sectional study and brief literature review., 31Feroze U. Martin D. Reina-Patton A. et al.Mental health, depression, and anxiety in patients on maintenance dialysis., 32Kopple J.D. Shapiro B.B. Feroze U. et al.Hemodialysis treatment engenders anxiety and emotional distress., 33Cohen S.D. Cukor D. Kimmel P.L. Anxiety in patients treated with hemodialysis., 34Anxiety and depression in patients with end-stage renal disease: impact and management challenges - a narrative review. For example, in a study of 170 people with CKD on maintenance dialysis, 29.1% experienced moderate or severe anxiety and 21.4% experienced moderate or severe depression.30Feroze U. Martin D. Kalantar-Zadeh K. et al.Anxiety and depression in maintenance dialysis patients: preliminary data of a cross-sectional study and brief literature review. In surveys of people with CKD on hemodialysis, it has been shown that precipitants of anxiety include seeing paramedics enter the hemodialysis unit, experiencing a different technician cannulating their vascular access and connecting them to the hemodialysis machine, and the frequent alarms sounding on the hemodialysis apparatus.30Feroze U. Martin D. Kalantar-Zadeh K. et al.Anxiety and depression in maintenance dialysis patients: preliminary data of a cross-sectional study and brief literature review.Studies suggest that depression and anxiety are highly undertreated and underdiagnosed in people with ESKD,35Hedayati S.S. Yalamanchili V. Finkelstein F.O. A practical approach to the treatment of depression in patients with chronic kidney disease and end-stage renal disease. are associated with worse clinical outcomes in people with moderate to advanced CKD,36Chiang H.H. Guo H.R. Livneh H. et al.Increased risk of progression to dialysis or death in CKD patients with depressive symptoms: A prospective 3-year follow-up cohort study. and may fluctuate over the course of the CKD progression, although there are comparatively less data on depression and anxiety in earlier stages of CKD. Social determinants of health that have been associated with depression and anxiety in CKD include sex, race or ethnicity, education, employment, marital status, and specific comorbidities (e.g., psychiatric illness, diabetes mellitus, hypertension, cardiovascular heart disease, and hypoalbuminemia).34Anxiety and depression in patients with end-stage renal disease: impact and management challenges - a narrative review.,37Norton J.M. Grunwald L. Banaag A. et al.Racial and socioeconomic disparities in CKD in the contex
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