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Leading the way in Kidney Supportive Care Research

The Development and Evaluation of State of the Art Prognostication in a Novel Palliative Care program for Patients with Advanced Chronic Kidney Disease

Functional and Symptom Trajectories in Elderly Patients with Advanced Chronic Kidney Disease and Their Association with Dialysis Initiation

Palliative care has historically focused on advanced cancer.  However, people with advanced non-cancer conditions also need excellent end of life care.  The Kidney Supportive Care Research Group (KSCRG) has shown that patients dying with advanced chronic kidney disease (CKD) have extensive end-of-life care considerations, rarely access palliative care services and the quality of their dying experience is poor.

This study aims to characterize the functional decline of patients dying with stage 5 CKD and evaluate and refine prognostic strategies to identify those with shortened survival within a novel palliative care program implemented recently within the Northern Alberta Renal Program (NARP).

The ability to predict survival is critical to provide effective and timely palliative care. The results from this study will help improve referral, clinical practice, and overall access to palliative care services for patients with advanced CKD.

This study is supported by the Canadian Institute of Health Research.

Older, frailer patients have extremely high rates of death, hospitalization and functional decline after starting dialysis. Certain older patients managed without dialysis may live almost or as long as patients who start dialysis, with better preservation of function and quality of life.

Unfortunately, we are unable to accurately identify patients for whom dialysis is unlikely to result in a benefit, thus limiting the ability to align treatment with patients’ goals.

This study aims to 1) characterize survival, function, quality of life, symptom burden, and transition to institutionalized care in patients ≥ 65 years old with stage 5  chronic kidney disease (CKD); 2)  identify characteristics associated with poor and good outcomes; and 3) characterize health care resource use.

Study results will inform the development of decision aids for clinicians and older patients around dialysis starts and will also inform the development of Conservative Kidney Management (CKM) pathways.

This study is s supported by the Canadian Institute of Health Research.

Collaborative Research Projects

Alberta Audit of Communication, CarE Planning, and DocumenTation (The Alberta ACCEPT Study): A Multicenter, Prospective Study

Effectiveness and Economic Impact of Advance Care Planning and Goals of Care Designations Discussions: A Randomized Controlled Trial (RCT) of Video Interventions

Advanced Care Planning (ACP) is a process of reflection on and communication of a person’s future healthcare preferences. ACP encourages dialogue between a patient, his/her family, and the healthcare team that can guide medical decision making even when a person becomes incapable of consenting to or refusing healthcare.

Three previous national ACCEPT audits identified components of goals of care discussions that were most important to patients including: talking about beliefs, values, and wishes of the patient, disclosure of prognosis, allowing a patient to express their fears and concerns, and explaining outcomes, risks, benefits and preferences of treatment options.

The objective of this audit it to determine, from patient perspectives, the prevalence of ACP engagement, satisfaction with goals of care communication and awareness of Goals of Care Designations (GCD), and to audit the documentation process in acute care. In order to drive improvement in patient related outcomes of ACP and GCD conversations, survey results will be provided to participating units, site administrators, zone leads, the ACP GCD provincial steering committee, external stakeholders (e.g. Alberta Health, Office of the Public Guardian, Health Quality Council of Alberta) and the results may be used to populate a dashboard of ACP GCD metrics in Alberta.

This study is funded by Alberta Innovates – Collaborative Research & Innovation Opportunities (CRIO).

As a result of healthcare advances, life can be supported beyond a time when people are capable of speaking for themselves about what care they want to receive. Most people prefer comfort care at some point, but many are over-treated because of lack of planning.

The patients and their families that have conversations about preferences for end of life care with their healthcare providers are much more likely to receive care that is consistent with their wishes. Without these conversations, patients may receive more invasive care at the end of life and have worse quality of life and death, and their loved ones tend to have worse bereavement adjustment.

Widespread uptake of Advance Care Planning (ACP) may be the most impactful approach available to assure patient and family-centered care that directly impacts quality of care and shifts healthcare expenditures. However, there is a knowledge-to-practice gap in the area of planning for end of life care.

This RCT aims to evaluate the effectiveness, impact, and economic costs of the current Alberta Health Services Advance Care Planning tools.

This study is funded by Alberta Innovates – Collaborative Research & Innovation Opportunities (CRIO).

Past Research Projects

End-Of-Life Care Needs for Patients with Chronic Kidney Disease

The Prevalence, Severity and Associations of Pain in Chronic Kidney Disease

Spiritual and Supportive Care Needs among Dialysis Patients

There is a need to extend end-of-life care beyond cancer to non-malignant chronic diseases such as end stage renal disease (ESRD).  Patients dying with ESRD have extensive and unique end-of-life care considerations and needs.

This study characterized the clinical needs, patterns of functional decline, and end-of-life care of patients with ESRD, and healthcare utilization.

The ultimate objective was to identify interventions for improving end-of-life care and to test the impact of these interventions in future randomized trials.

This study was funded by the Canadian Institutes of Health Research.

A systematic review to determine the extent, range and nature of research activity around pain in chronic kidney disease (CKD) was conducted as part of Kidney Disease: Improving Global Outcomes’ (KDIGO’s) effort to develop formal international recommendations for palliative care including the management of chronic pain in CKD.

The scope of this review was broad and resulted in a rich database of literature that served as a foundation for this more detailed systematic review focusing on the prevalence, severity of pain and associations across broad populations of patients with varying stages of CKD.

Kidney failure is a life-altering disease and its treatment by dialysis places many stresses upon patients that challenge their view of the world, themselves, and their future.

Quality care goes beyond the physical to encompass psychological, social, emotional, and spiritual needs.

This study evaluated the supportive and spiritual needs reported by dialysis patients and described how they are associated with patient characteristics and their quality of life, adjustment to their illness, burden of symptoms and death.

End-of-Life Care in End-Stage Renal Disease: Integration of an Advanced Care Planning Process

Physicians have typically borne the responsibility of initiating Advance Care Planning with patients and their families. However, unlike other interventions, there were no standards of care regarding when to initiate or how to conduct these discussions.

The Northern Alberta Renal Program restructured their end-of-life care program with the hope of improving the quality of care, including the quality of the dying experience for end stage renal patients.

This study evaluated the novel process of facilitated advanced care planning for dialysis patients and their families.

State of the Art Research in the Faculty of Medicine & Dentistry at the University of Alberta.

A comparison of patients who choose conservative therapy and those who choose dialysis

Caring for patients with kidney failure, especially those who choose not to start dialysis, involves providing effective end of life care.

This study characterized the symptom burden, health-related quality of life and survival for patients with stage 5 chronic kidney disease who choose not to start dialysis and how they compare to those patients who decide to be treated with dialysis therapy.

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Vision: To help people enjoy life while living with advanced chronic kidney disease by becoming a world leader in kidney supportive care research and clinical innovation.

Kidney Supportive Care Research Group (KSCRG)  l  Mailing Address: 8-105 Clinical Sciences Building, University of Alberta, 11350 83 Avenue NW, Edmonton, AB, T6G 2G3  l  Email: kscrg@ualberta.ca  l  Phone: (780) 492-0926 l  Fax: (780) 407-8117

Kidney Supportive Care Research Group (KSCRG)

A comparison of patients who choose conservative therapy and those who choose dialysis