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Background: We aimed to describe (1) depressive and anxiety symptom burdens reported by adults on in-centre hemodialysis in Northern Alberta, Canada and (2) patients' and nurses' perceptions of managing such symptoms using routine patient-reported outcome measures (PROMs)., Methods: A longitudinal mixed methods approach was employed. Cluster randomized controlled trial data exposed the prevalence of positive screens (scores ≥ 3) for depressive (PHQ-2) and anxiety (GAD-2) symptoms. A descriptive qualitative approach was used to understand patients' and nurses' perceptions of managing these symptoms using the ESAS-r: Renal and EQ-5D-5L. Using purposeful sampling, patients and nurses were invited for interviews. Field notes were documented from 6 dialysis unit observations. Patients' responses to open-ended survey questions and nurses' electronic chart notes related to mental health were compiled. Thematic and content analyses were used., Results: Average age of patients (n = 408) was 64.0 years (SD 15.4), 57% were male, and 87% were not working; 29% screened positive for depressive symptoms, 21% for anxiety symptoms, and 16% for both. From patient (n = 10) and nurse (n = 8) interviews, unit observations, patient survey responses (n = 779) and nurses' chart notes (n = 84), we discerned that PROMs (ESAS-r: Renal/EQ-5D-5L) had the potential to identify and prompt management of mental health concerns. However, opinions differed about whether mental health was within kidney care scope. Nonetheless, participants agreed there was a lack of mental health resources., Conclusions: Prevalence of depressive and anxiety symptoms aligned with existing literature. Tensions regarding mental health management highlight the need for systemic decisions about how routine PROM use, including mental health assessment, may be optimized to meet patients' needs., (© 2021. The Author(s).)

Kidney failure requiring dialysis is associated with high symptom burden and low health-related quality of life (HRQL). Patient-reported outcome measures (PROMs) are standardized instruments that capture patients' symptom burden, level of functioning, and HRQL. The routine use of PROMs can be used to monitor aspects of patients' health that may otherwise be overlooked, inform care planning, and facilitate the introduction of treatments. Incorporating PROMs into clinical practice is an appropriate strategy to engage patients and enhance their role in decisions regarding their care and outcomes. However, the implementation of PROMs measurement and associated interventions can be challenging given the nature of clinical practice in busy hemodialysis units, the variations in organization and clinical workflow across units, as well as regional programs. Implementing PROMs and linking these with actionable treatment aids to alleviate bothersome symptoms and improve patients' wellbeing is key to improving patients' health. Other considerations in implementing PROMs within a hemodialysis setting include integration into electronic medical records, purchase and configuration of electronic tools (i.e., tablets), storage and disinfection of such tools, and ongoing IT resources. It is important to train clinicians on the practical elements of using PROMs, however there is also a need to engage clinicians to use PROMs on an ongoing basis. This article describes how PROMs have been implemented at in-centre hemodialysis units in Alberta, Canada, addressing each of these elements., (© 2021. The Author(s).)

Rationale & Objective: Approximately 11% of people with kidney failure worldwide are treated with peritoneal dialysis (PD). This study examined PD use and practice patterns across the globe., Study Design: A cross-sectional survey., Setting & Participants: Stakeholders including clinicians, policy makers, and patient representatives in 182 countries convened by the International Society of Nephrology between July and September 2018., Outcomes: PD use, availability, accessibility, affordability, delivery, and reporting of quality outcome measures., Analytical Approach: Descriptive statistics., Results: Responses were received from 88% (n=160) of countries and there were 313 participants (257 nephrologists [82%], 22 non-nephrologist physicians [7%], 6 other health professionals [2%], 17 administrators/policy makers/civil servants [5%], and 11 others [4%]). 85% (n=156) of countries responded to questions about PD. Median PD use was 38.1 per million population. PD was not available in 30 of the 156 (19%) countries responding to PD-related questions, particularly in countries in Africa (20/41) and low-income countries (15/22). In 69% of countries, PD was the initial dialysis modality for≤10% of patients with newly diagnosed kidney failure. Patients receiving PD were expected to pay 1% to 25% of treatment costs, and higher (>75%) copayments (out-of-pocket expenses incurred by patients) were more common in South Asia and low-income countries. Average exchange volumes were adequate (defined as 3-4 exchanges per day or the equivalent for automated PD) in 72% of countries. PD quality outcome monitoring and reporting were variable. Most countries did not measure patient-reported PD outcomes., Limitations: Low responses from policy makers; limited ability to provide more in-depth explanations underpinning outcomes from each country due to lack of granular data; lack of objective data., Conclusions: Large inter- and intraregional disparities exist in PD availability, accessibility, affordability, delivery, and reporting of quality outcome measures around the world, with the greatest gaps observed in Africa and South Asia., (Crown Copyright © 2020. Published by Elsevier Inc. All rights reserved.)

Rationale & Objective: Hemodialysis (HD) is the most common form of kidney replacement therapy. This study aimed to examine the use, availability, accessibility, affordability, and quality of HD care worldwide., Study Design: A cross-sectional survey., Setting & Participants: Stakeholders (clinicians, policy makers, and consumer representatives) in 182 countries were convened by the International Society of Nephrology from July to September 2018., Outcomes: Use, availability, accessibility, affordability, and quality of HD care., Analytical Approach: Descriptive statistics., Results: Overall, representatives from 160 (88%) countries participated. Median country-specific use of maintenance HD was 298.4 (IQR, 80.5-599.4) per million population (pmp). Global median HD use among incident patients with kidney failure was 98.0 (IQR, 81.5-140.8) pmp and median number of HD centers was 4.5 (IQR, 1.2-9.9) pmp. Adequate HD services (3-4 hours 3 times weekly) were generally available in 27% of low-income countries. Home HD was generally available in 36% of high-income countries. 32% of countries performed monitoring of patient-reported outcomes; 61%, monitoring of small-solute clearance; 60%, monitoring of bone mineral markers; 51%, monitoring of technique survival; and 60%, monitoring of patient survival. At initiation of maintenance dialysis, only 5% of countries used an arteriovenous access in almost all patients. Vascular access education was suboptimal, funding for vascular access procedures was not uniform, and copayments were greater in countries with lower levels of income. Patients in 23% of the low-income countries had to pay >75% of HD costs compared with patients in only 4% of high-income countries., Limitations: A cross-sectional survey with possibility of response bias, social desirability bias, and limited data collection preventing in-depth analysis., Conclusions: In summary, findings reveal substantial variations in global HD use, availability, accessibility, quality, and affordability worldwide, with the lowest use evident in low- and lower-middle-income countries., (Crown Copyright © 2020. Published by Elsevier Inc. All rights reserved.)

Kidney supportive care requires a highly personalized approach to care. Precision medicine holds promise for a deeper understanding of the pathophysiology of symptoms and related syndromes and more precise individualization of prognosis and treatment estimates, therefore providing valuable opportunities for greater personalization of supportive care. However, the major drivers of quality of life are psychosocial, economic, lifestyle, and preference-based, and consideration of these factors and skilled communication are integral to the provision of excellent and personalized kidney supportive care. This article discusses the concepts of personalized and precision medicine in the context of kidney supportive care and highlights some opportunities and limitations within these fields., (Copyright © 2018 Elsevier Inc. All rights reserved.)

Objectives: Palliative care is greatly underutilised for patients dying from advanced chronic kidney disease (CKD). This study explored CKD patients' knowledge of, and attitudes to, palliative and hospice care., Design and Intervention: This was a cross-sectional interview-based survey of stage 5 CKD patients., Setting: Both dialysis patients and those managed without dialysis were assessed in a university-based renal programme in Alberta, Canada., Outcome Measures: The primary outcome was validated patient knowledge of, and attitudes, towards palliative and hospice care. Secondary analyses of associations between knowledge and potential explanatory variables such as patient demographics, living circumstances, self-assigned ethnicity, socioeconomic position and sources of knowledge were explored., Results: Only 22.2% and 17.9% of 436 patients surveyed possessed a correct understanding of palliative and hospice care, respectively, and perceptions were mostly negative. Sources of knowledge of these services rarely involved healthcare professionals (3.1%-7.7%). Multivariable analysis identified that white participants were more than 12 times more likely to have accurate knowledge than non-Caucasian patients, not accounted for by socioeconomic position. Accurate knowledge was also more likely among patients who had personal experience with palliative care, or obtained their knowledge firsthand from family and friends. After palliative and hospice care were described, the vast majority of patients felt these services were valuable and should be offered to patients with advanced CKD (87.8% and 89.7%, respectively)., Conclusions: Based on study findings, CKD patient and family education about the benefits of palliative and hospice services is likely important in optimal use of these services., (Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/)

As the number of Canadians living with end-stage kidney disease (ESKD) continues to grow, even higher numbers are living with advanced chronic kidney disease (CKD). Many of these people will eventually require renal replacement therapy (RRT), either dialysis or transplantation. More than 50% of patients starting RRT today are aged 65 or older, with the fastest growing group being patients 75 years and older. Despite advances to dialysis technology and dialysis care, the mortality rates remain high and dialysis patients' end-of-life care may not align with their preferences or values. Advance care planning (ACP) is an essential component of quality comprehensive kidney care. Kidney care teams develop strong relationships with their patients and are well positioned to integrate ACP into routine kidney care. This article defines ACP, outlines the essential components of ACP, and discusses the benefits, challenges, and special considerations of ACP. By enhancing the kidney care team's understanding of ACP, this article aims to assist in integrating ACP into routine kidney care for patients with advanced CKD.

The past five decades have shown a tremendous growth, world wide, in the number of patients with advanced chronic kidney disease (CKD). Patients with advanced CKD today are notably older, have significant comorbidity, substantial symptom burden and, ultimately, have high mortality. Subsequently, there is an increased global awareness of the need to integrate palliative care into routine kidney care to enhance the quality of life and death for patients with advanced CKD. This article outlines a conceptual framework for kidney palliative care for patients with advanced CKD and discusses issues such as symptom burden, illness trajectories, advance care planning, and complex decision-making, including decisions around the appropriate initiation, withholding and withdrawal of dialysis, and the potential palliative care roles and responsibilities for nursing staff within kidney care programs.

Background: Organ donation and transplantation rates are low for aboriginal people in Canada, despite a high demand., Study Design: An explanatory mixed-methods design was used to describe knowledge of and preferences for organ donation and transplantation among First Nations people and identify factors that may influence these preferences., Setting & Participants: We recruited on- and off-reservation First Nations adults., Methodology: A 45-item survey was administered to 198 participants, of whom 21 were assessed further with a qualitative interview using a multiple case study approach., Analytical Approach: In an iterative process, themes were identified from qualitative data using critical realism as the theoretical framework. Critical realism is an approach that describes the interface between natural and social worlds to explain human behavior., Results: Although 83% of participants were in favor of transplantation, only 38% were willing to donate their organs after death, 44% had not thought about organ donation, and 14% did not believe it was important. Only 18.7% of participants reported that their cultural beliefs influenced their views on organ donation and transplantation. In the multivariable analysis, the only factors associated with willingness to donate organs were higher education and considering organ donation important. Four themes emerged from qualitative data: importance of traditional beliefs, recognition of need due to the epidemic of diabetes among Canadian aboriginal people, reconciliation between traditional beliefs and need, and general apathy in the community., Limitations: Cultural, socioeconomic, and political diversity exist between and within aboriginal groups. Findings may not be generalizable to other aboriginal communities., Conclusions: Willingness to donate organs was lower in these First Nations participants compared to the general population. Education to address knowledge deficits, emphasize the negative impact of organ failure on the community, and contextualize organ donation within the older traditional native beliefs to help First Nations people understand how organ donation may be integrated into native spirituality likely is required to increase donation rates., (Copyright © 2014 National Kidney Foundation, Inc. Published by Elsevier Inc. All rights reserved.)

Objective: Assess within-subject agreement and compare discriminative abilities between the SF-6D and the Health Utilities Index Mark 3 (HUI3) in patients with chronic kidney disease (CKD)., Methods: The HUI3 and Short Form-36 were self-completed by 185 CKD patients enrolled in a prospective study of incident patients with stage 4 and 5 CKD., Results: The mean preference-based score for the SF-6D was 0.67 +/- 0.13 compared to 0.58 +/- 0.26 for the HUI3 (P < 0.01). There was a strong association between SF-6D and HUI3 scores (Pearson correlation coefficient 0.55, 95% CI 0.43-0.65) and moderate agreement with an intraclass correlation coefficient of 0.44. The HUI3 was better able to capture more severe burden of illness with fewer floor effects. The SF-6D was better at capturing differences among patients at the top range of the scale with fewer ceiling effects. Both the HUI3 and SF-6D were able to discriminate between patient groups differing in disease severity defined as predialysis versus dialysis dependent and depressive symptoms using a Beck Depression Inventory II score of >or=14 as the cutoff. The HUI3 was better able to discriminate greater depressive symptoms., Conclusion: The SF-6D and the HUI3 generate different preference-based scores for patients with CKD and any comparison between their scores should be made with caution. The HUI3 appears more suitable for measuring the health of populations with greater disability such as patients with CKD. It remains to be determined whether these differences will remain when one compares within-instrument differences in preference scores over time.

Objective: To describe the pharmacokinetics of hydromorphone (HM) and its primary metabolite hydromorphone-3-glucuronide (H3G) both on and off dialysis in relation to the pharmacodynamic measurements of pain., Design: Prospective, open-label, observational study., Setting: Canadian, university-based renal program., Participants: Twelve anuric hemodialysis patients with chronic pain, established on immediate-release HM., Main Outcome Measures: HM and H3G plasma concentrations were measured during and between hemodialysis treatments using a reverse-phase high-performance liquid chromatography assay with liquid chromatography/mass spectrometer/mass spectrometer detection. The McGill Pain Questionnaire (MPQ) and a Visual Analogue Scale (VAS) were used to measure pain. Noncompartmental analyses were conducted. Adverse effects were recorded., Results: HM did not substantially accumulate (accumulation factor R = 2.7 (1.6)), most likely due to the rapid conversion to H3G. Conversely, H3G accumulated between dialysis treatments (R = 12.5 (12.1)) but appeared to be effectively removed during hemodialysis (1.8 (0.7), p = 0.03). HM resulted in > 65 percent reduction in pain over dosing intervals. Mean MPQ pain scores decreased from 39.8 (18.2) to 12.3 (16.2) on dialysis and from 35.0 (18.5) to 15.5 (13.6) between dialysis treatments. Mean VAS pain scores decreased from 7.5 (2.5) to 3.0 (1.5) on dialysis and from 5.9 (3.2) to 4.4 (1.6) between dialysis treatments. No clinically significant opioid toxicity was observed. The accumulation of H3G between hemodialysis treatments was associated with greater sensory-type pain (r = 0.76, p < 0.0001) and reduced duration of analgesia., Conclusions: HM may be a safe and effective opioid for use in selected hemodialysis patients.

Objective: This study assessed the construct validity of the Health Utilities Index Mark 2 (HUI2) and Mark 3 (HUI3) in the context of chronic kidney disease (CKD) and compared their ability to discriminate between groups of patients with varying disease severity., Study Design and Setting: The HUI2 and HUI3 were correlated with the Medical Outcomes 36-Item Short-Form, Kidney Disease Quality of Life Questionnaire, and the Beck Depression Inventory II in 185 patients with stage 4 and 5 CKD., Results: About 86% of a priori hypotheses were confirmed for HUI2 and 95% for HUI3, providing support for the construct validity of both measures. Mean (SD) overall utility score for the HUI2 was 0.74 (0.20), significantly higher than that for the HUI3, 0.58 (0.26) (P<0.001). The cognitive, emotion, and pain attributes of the HUI3 were able to identify a significantly greater proportion of patients with impairment compared to the HUI2., Conclusion: The results are consistent with construct validity for the HUI2 and HUI3 in patients with stage 4 and 5 CKD. However, the HUI3 appears to have superior psychometric properties compared with the HUI2 in this patient population.

Objective: To understand hope in the context of advance care planning from the perspective of patients with end stage renal disease., Design: Qualitative in-depth interview study., Setting: Outpatient department of a university affiliated nephrology programme., Participants: 19 patients with end stage renal disease purposively selected from the renal insufficiency, haemodialysis, and peritoneal dialysis clinics., Results: Patients' hopes were highly individualised and were shaped by personal values. They reflected a preoccupation with their daily lives. Participants identified hope as central to the process of advance care planning in that hope helped them to determine future goals of care and provided insight into the perceived benefits of advance care planning and their willingness to engage in end of life discussions. More information earlier in the course of the illness focusing on the impact on daily life, along with empowerment of the patient and enhancing professional and personal relationships, were key factors in sustaining patients' ability to hope. This helped them to imagine possibilities for a future that were consistent with their values and hopes. The reliance on health professionals to initiate end of life discussions and the daily focus of clinical care were seen as potential barriers to hope., Conclusions: Facilitated advance care planning through the provision of timely appropriate information can positively enhance rather than diminish patients' hope. Current practices concerning disclosure of prognosis are ethically and psychologically inadequate in that they do not meet the needs of patients.