Executive summary of the KDIGO Controversies Conference on Supportive Care in Chronic Kidney Disease: developing a roadmap to improving quality care
Authors: Sara N. Davison, Adeera Levin, Alvin H. Moss, Vivekanand Jha, Edwina A. Brown, Frank Brennan, Fliss E.M. Murtagh, Saraladevi Naicker, Michael J. Germain, Donal J. O'Donoghue, Rachael L. Morton, Gregorio T. Obrador
Journal: Kidney International (2015)

Patients with advanced chronic kidney disease (CKD) have a high burden of physical and psychosocial symptoms, poor outcomes, and high costs of care. Current paradigms of care for this highly vulnerable population are variable, prognostic and assessment tools are limited, and quality of care, particularly regarding conservative and palliative care, is suboptimal. The KDIGO Controversies Conference on Supportive Care in CKD reviewed the current state of knowledge in order to define a roadmap to guide clinical and research activities focused on improving the outcomes of people living with advanced CKD, including those on dialysis. An international group of multidisciplinary experts in CKD, palliative care, methodology, economics, and education identified the key issues related to palliative care in this population. The conference led to a working plan to address outstanding issues in this arena, and this executive summary serves as an output to guide future work, including the development of globally applicable guidelines. Patients with advanced chronic kidney disease (CKD) have a high burden of physical and psychosocial symptoms, poor outcomes, and high costs of care. Current paradigms of care for this highly vulnerable population are variable, prognostic and assessment tools are limited, and quality of care, particularly regarding conservative and palliative care, is suboptimal. The KDIGO Controversies Conference on Supportive Care in CKD reviewed the current state of knowledge in order to define a roadmap to guide clinical and research activities focused on improving the outcomes of people living with advanced CKD, including those on dialysis. An international group of multidisciplinary experts in CKD, palliative care, methodology, economics, and education identified the key issues related to palliative care in this population. The conference led to a working plan to address outstanding issues in this arena, and this executive summary serves as an output to guide future work, including the development of globally applicable guidelines. Patients with advanced chronic kidney disease (CKD) have a high burden of physical and psychosocial symptoms, poor outcomes, and high costs of care. Annual mortality of patients on dialysis exceeds 20%. Withdrawal from dialysis is a common cause of death for dialysis patients worldwide, reflecting their poor health-related quality of life (HRQL), although this may be owing to nonmedical reasons in low-income and lower-middle-income countries. The high level of disability and symptom burden in some patients with advanced CKD is not necessarily improved by dialysis. To improve the quality of care, it is now recognized that palliative care principles need to be integrated into the routine care of these patients. Despite great need, palliative care is underutilized among patients with advanced CKD compared with other chronic disease populations, even in countries where such care is available.1.Murray A.M. Arko C. Chen S.C. et al.Use of hospice in the United States dialysis population.Clin J Am Soc Nephrol. 2006; 1: 1248-1255Crossref PubMed Scopus (63) Google Scholar,2.Green J.A. Mor M.K. Shields A.M. et al.Renal provider perceptions and practice patterns regarding the management of pain, sexual dysfunction, and depression in hemodialysis patients.J Palliat Med. 2012; 15: 163-167Crossref PubMed Scopus (5) Google Scholar Rates of hospitalization, intensive care unit admissions, and other intensive treatments are higher for CKD patients in the last month of life compared with other severe chronic illnesses, including chronic obstructive lung disease, congestive heart failure, and advanced liver disease.3.Wong S.P. Kreuter W. O'Hare A.M. Treatment intensity at the end of life in older adults receiving long-term dialysis.Arch Intern Med. 2012; 172: 661-663Crossref PubMed Scopus (45) Google Scholar Current evidence suggests that end-of-life care practices are not consistent with preferences of patients with advanced CKD (i.e., GFR categories G4 and G5).4.Davison S.N. End-of-life care preferences and needs: perceptions of patients with chronic kidney disease.Clin J Am Soc Nephrol. 2010; 5: 195-204Crossref PubMed Scopus (144) Google Scholar The majority of dialysis patients die in acute care facilities, receiving high-intensity care that may be unwanted.1.Murray A.M. Arko C. Chen S.C. et al.Use of hospice in the United States dialysis population.Clin J Am Soc Nephrol. 2006; 1: 1248-1255Crossref PubMed Scopus (63) Google Scholar Health systems and policies that integrate palliative care are urgently required to optimize the care of CKD patients. To achieve international, multidisciplinary, transparent, and unbiased analysis, Kidney Disease: Improving Global Outcomes (KDIGO), in partnership with the International Society of Nephrology, brought together experts from around the world to a Controversies Conference on Supportive Care in CKD in Mexico City in December 2013. Drs Sara Davison (University of Alberta, Edmonton, AB, Canada) and Gregorio Obrador (Universidad Panamericana School of Medicine, Mexico City, Mexico) co-chaired this conference. The objectives were to (1) develop consensus on a definition and conceptual framework for kidney supportive care; (2) summarize the current state of knowledge of kidney supportive care; (3) discuss what recommendations could be derived from the available knowledge; and (4) assess what needs to be undertaken to improve the evidence base for clinical management and policy development. The conference format and deliberations allowed for consensus building, and were based on work and literature reviews performed before the meeting, presentations at the meeting, and formulations of action plans after the meeting. The overall aim of this conference was to discuss issues related to the international application of supportive medicine to CKD patients with the ultimate goal of working toward the development of globally applicable guidelines. A total of 45 participants with representation from all parts of the world attended, including leading worldwide experts in supportive care, nephrology, epidemiology, health economics, and research, in order to ensure diverse perspectives and inform the discussions. Four clinical fellows were included with the goal of building clinical and research capacity in kidney supportive care. The key areas discussed included the following: (1) symptom assessment and management; (2) prognostication; (3) shared decision making and advance care planning (ACP); (4) withdrawal of dialysis; and (5) conservative (nondialysis) care. The scope of this conference was limited to patients with established CKD, mostly under the care of nephrologists. Issues related to patients with acute kidney injury and kidney transplantation were not addressed. Owing to a dearth of evidence in pediatric patients, this work focused on adults. Participants were involved in plenary sessions and breakout groups to foster discussion and critical review of data and to develop recommendations for clinical guidance and research. Further conference details can be found at the KDIGO website.5.Supportive/Palliative Care in CKD: Kidney Disease Improving Global Outcomes. http://kdigo.org/home/conferences/supportivecare/ (Accessed 8 January 2015).Google Scholar To ensure that all discussions and outputs were anchored in a common definition, we adopted the World Health Organization definition of palliative care6.WHO Definition of Palliative Care. World Health Organization. http://www.who.int/cancer/palliative/definition/en/ (Accessed 8 January 2015).Google Scholar. Palliative care, therefore, is an approach that improves the HRQL of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial, and spiritual. However, the term ‘supportive care’ is used throughout this report rather than ‘palliative care’ because patients and health-care professionals prefer it,7.Dalal S. Palla S. Hui D. et al.Association between a name change from palliative to supportive care and the timing of patient referrals at a comprehensive cancer center.Oncologist. 2011; 16: 105-111Crossref PubMed Scopus (53) Google Scholar, 8.Center to Advance Palliative Care: 2011 Public Opinion Research on Palliative Care: A Report Based on Research by Public Opinion Strategies. The Center to Advance Palliative Care, New York2011Google Scholar, 9.Wentlandt K. Krzyzanowska M.K. 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Hospice/terminal care, also referred to as end-of-life care, shares the same philosophy, but it is under the larger umbrella of supportive care, and it is typically limited to patients who are believed to be within months of death (Figure 1). The following sections describe the key discussion points and recommendations of the various workgroups. Patients with advanced CKD experience a multiplicity of symptoms, and these symptoms constitute a large burden for patients and caregivers. Eight validated global symptom assessment tools of varying length and utility exist for CKD patients,12.Davison S.N. Koncicki H. Brennan F. Pain in chronic kidney disease: a scoping review.Semin Dial. 2014; 27: 188-204Crossref PubMed Scopus (9) Google Scholar including the Edmonton Symptom Assessment System-revised: Renal,13.Davison S.N. Jhangri G.S. Johnson J.A. Cross-sectional validity of a modified Edmonton symptom assessment system in dialysis patients: a simple assessment of symptom burden.Kidney Int. 2006; 69: 1621-1625Abstract Full Text Full Text PDF PubMed Scopus (100) Google Scholar, 14.Davison S.N. Jhangri G.S. Johnson J.A. Longitudinal validation of a modified Edmonton symptom assessment system (ESAS) in haemodialysis patients.Nephrol Dial Transplant. 2006; 21: 3189-3195Crossref PubMed Scopus (61) Google Scholar, 15.Davison S.N. Edmonton Symptom Assessment System Revised: Renal (ESAS-r: Renal). Vol. 2014. 2014Google Scholar the Palliative Care Outcome Scale–Renal,16.Hearn J. Higginson I.J. Development and validation of a core outcome measure for palliative care: the palliative care outcome scale. Palliative Care Core Audit Project Advisory Group.Qual Health Care. 1999; 8: 219-227Crossref PubMed Google Scholar,17.Murphy E.L. Murtagh F.E. Carey I. et al.Understanding symptoms in patients with advanced chronic kidney disease managed without dialysis: use of a short patient-completed assessment tool.Nephron Clin Pract. 2009; 111: c74-c80Crossref PubMed Scopus (46) Google Scholar and the Dialysis Symptom Index.18.Weisbord S.D. Fried L.F. Arnold R.M. et al.Development of a symptom assessment instrument for chronic hemodialysis patients: the Dialysis Symptom Index.J Pain Symptom Manage. 2004; 27: 226-240Abstract Full Text Full Text PDF PubMed Scopus (65) Google Scholar These tools have been translated into several languages, and they are appropriate for routine screening in renal programs to identify patients’ common and troublesome symptoms, including patients who are in the last days of life.12.Davison S.N. Koncicki H. Brennan F. Pain in chronic kidney disease: a scoping review.Semin Dial. 2014; 27: 188-204Crossref PubMed Scopus (9) Google Scholar, 13.Davison S.N. Jhangri G.S. Johnson J.A. 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Mor M.K. et al.Renal provider recognition of symptoms in patients on maintenance hemodialysis.Clin J Am Soc Nephrol. 2007; 2: 960-967Crossref PubMed Scopus (73) Google Scholar Regular symptom assessment using validated tools helps redirect treatment toward a patient-centered care model and provides the opportunity for discussions about appropriate supportive care options. Patient-centered care emphasizes treatment that matters most to patients and aligns treatment to patients’ values, preferences, and goals. Patients with advanced CKD have identified symptom assessment and management as a top priority.26.O'Hare A.M. Armistead N. Schrag W.L. et al.Patient-centered care: an opportunity to accomplish the "Three Aims" of the National Quality Strategy in the Medicare ESRD program.Clin J Am Soc Nephrol. 2014; 9: 2189-2194Crossref PubMed Scopus (8) Google Scholar,27.Manns B. Hemmelgarn B. Lillie E. et al.Setting research priorities for patients on or nearing dialysis.Clin J Am Soc Nephrol. 2014; 9: 1813-1821Crossref PubMed Scopus (16) Google Scholar Patients should also be screened for depressive symptoms using standardized instruments that have well-documented evidence for validity in CKD.28.Hedayati S.S. Minhajuddin A.T. Toto R.D. et al.Validation of depression screening scales in patients with CKD.Am J Kidney Dis. 2009; 54: 433-439Abstract Full Text Full Text PDF PubMed Scopus (48) Google Scholar, 29.Craven J.L. Rodin G.M. Littlefield C. The Beck Depression Inventory as a screening device for major depression in renal dialysis patients.Int J Psychiatry Med. 1988; 18: 365-374Crossref PubMed Google Scholar, 30.Hedayati S.S. Bosworth H.B. Kuchibhatla M. et al.The predictive value of self-report scales compared with physician diagnosis of depression in hemodialysis patients.Kidney Int. 2006; 69: 1662-1668Abstract Full Text Full Text PDF PubMed Scopus (155) Google Scholar, 31.Watnick S. Wang P.L. Demadura T. et al.Validation of 2 depression screening tools in dialysis patients.Am J Kidney Dis. 2005; 46: 919-924Abstract Full Text Full Text PDF PubMed Scopus (142) Google Scholar One of the controversies is uncertainty about what health-care providers should do with symptom screening information once identified. Many health-care providers, especially in low-income and lower-middle-income countries, have limited access to expertise or resources to pursue effective treatment options. Given the burden of illness, there was clear consensus that resources are needed to address somatic symptoms and depression in this population. The International Association for Hospice and Palliative Care, following a request by the World Health Organization, developed a list of essential medicines for symptom management in palliative care. The group recommended the development of a similar list of essential medicines in the context of advanced CKD. Limitations related to gaps in quality of evidence in this population, and the wide variations in the affordability and accessibility of medications in various parts of the world, were noted. Developing treatment strategies is difficult given the complexity of CKD patients and the considerable variation in the level of evidence for management strategies for different symptoms. Many of the recommendations have been extrapolated from treatments used successfully in the general population. Studies to evaluate treatment efficacy in CKD are often underpowered and typically do not address outcomes that are most relevant to patients, such as overall symptom burden and HRQL. Extrapolation from the general literature, however, may guide treatment, especially where promising interventions have a low risk to high benefit ratio. Several nonpharmacologic and pharmacologic management strategies are potentially effective for managing multiple symptoms concurrently, and they may have a synergistic effect on overall HRQL. Nonpharmacological interventions may apply in multiple contexts including varying socioeconomic and cultural contexts. Table 1 provides a high-level summary of the literature synthesis for some of the common symptoms experienced by CKD patients.Table 1Symptoms in CKD: literature synthesisSymptomSummary of prevalence and severityImpactManagementUremic pruritus24 studies representing 19,226 dialysis patients reported a mean prevalence of 40.6%.79.Welter Ede Q. Frainer R.H. 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