Restless legs syndrome (RLS) is a neurologic disorder characterized by 1) an urge to mover the legs, 2) uncomfortable sensations in the legs, 3) symptoms are often worse in the evening or when at rest, and 4) may be temporarily relieved by physical activity. RLS is separated into primary and secondary forms. Secondary RLS is usually associated with underlying medical conditions such as end-stage kidney disease.

While non-pharmacological measures should be considered for all patients, pharmacological treatment for RLS is indicated when the symptoms lead to significant insomnia or impaired quality of life.

Gabapentin and dopamine agonists are usually the first choices in treating RLS but there are few data for their use in end stage stage kidney disease. This study aims to evaluate the effectiveness of ropinirole and gabapentin for the treatment of RLS in patients on hemodialysis.

This study was supported by the University of Hospital Foundation.

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 was supported by the Canadian Institute of Health Research.

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

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 was funded by Alberta Innovates – Collaborative Research & Innovation Opportunities (CRIO).

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

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 was funded by Alberta Innovates – Collaborative Research & Innovation Opportunities (CRIO).

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.