Decisional Needs of People From Minority Ethnic Groups Around Living Donor Kidney Transplantation: A UK Healthcare Professionals' Perspective.

Despite improved patient and clinical outcomes, living donor kidney transplantation is underutilized in the United Kingdom, particularly among minority ethnic groups, compared to deceased donor kidney transplantation. This may in part be due to the way in which kidney services present information about treatment options. With a focus on ethnicity, semi structured interviews captured the views of 19 kidney healthcare professionals from two renal centres in West Yorkshire, about the decisional needs and context within which people with advanced kidney disease make transplant decisions. Data were analysed using thematic analysis. Themes were categorized into three groups: 1) Kidney healthcare professionals: language, cultural awareness, trusted personnel, and staff diversity, 2) Patient information resources: timing and setting of education and suitability of patient-facing information and, 3) People with advanced kidney disease: knowledge, risk perception, and cultural/religious beliefs. To our knowledge, this is the first study in the United Kingdom to investigate in depth, healthcare professionals' views on living donor kidney transplantation decision making. Six recommendations for service improvement/delivery to support decision making around living donor kidney transplantation among minority ethnic groups are described.

Translation, cultural adaptation, and validation of the Integrated Palliative Outcome Scale-renal (IPOS-r) to Czech.

BACKGROUND: Patients with advanced kidney disease suffer from burdensome symptoms, which should be assessed by valid and reliable patient-reported outcome measures. This study aimed to provide a translation, cultural adaptation, and validation of the Czech version of the IPOS-r. METHODS: The IPOS-r was translated to Czech and culturally adapted using cognitive interviews. During the validation phase, patients and staff in dialysis centres and outpatient renal clinics completed the IPOS-r. Internal consistency was tested with Cronbach's alpha, its reliability via intraclass correlation coefficient for total IPOS-r score, and weighted Kappa (for test-retest and interrater reliability of individual items). Convergent validity was tested with Spearman correlation to Kidney Disease Quality of Life Survey-Short Form 1.2 (KDQOL-SF 1.2). We assessed sensitivity to change using a distribution-based approach. RESULTS: Two sets of translators independently performed forward and backward translations of the IPOS-r. Ten patients and ten health care professionals participated in cognitive pre-testing. The sample size for validation included 88 patients (mean age 66 ± SD13.8; 58% men) who were treated with haemodialysis (70.5%), home haemodialysis (5.5%), peritoneal dialysis (3%), and conservative management (21%). Cronbach's alpha was 0.72, and the intraclass correlation was 0.84 for test-retest reliability and 0.73 for interrater reliability. The IPOS-r correlated with KDQOL-SF 1.2 had a rho between 0.4-0.8 for most of the IPOS-r items, showing good convergent validity. The IPOS-r measure is feasible and takes 9 minutes to complete. Patients who reported a change in health status after 1 month demonstrated a total IPOS-r score change of eight points in both positive and negative directions. CONCLUSIONS: The process of translation and cultural adaptation of the IPOS-r was successful, and the Czech IPOS-r measure is a valid and reliable tool. The Czech IPOS-r can be used to assess symptoms in patients with advanced chronic kidney disease. TRIAL REGISTRATION: GAUK [82121].

Association between baseline LDL-C and prognosis among patients with coronary artery disease and advanced kidney disease.

BACKGROUND: Lower low-density lipoprotein cholesterol (LDL-C) is significantly associated with improved prognosis in patients with coronary artery disease (CAD). However, LDL-C reduction does not decrease all-cause mortality among CAD patients when renal function impairs. The association between low baseline LDL-C (< 1.8 mmol/L) and mortality is unknown among patients with CAD and advanced kidney disease (AKD). The current study aimed to evaluate prognostic value of low baseline LDL-C level for all-cause death in these patients. METHODS: In this observational study, 803 CAD patients complicated with AKD (eGFR < 30 mL/min/1.73 m2) were enrolled between January 2008 to December 2018. Patients were divided into two groups (LDL-C < 1.8 mmol/L, n = 138; LDL-C ≥ 1.8 mmol/L, n = 665). We used Kaplan-Meier methods and Cox regression analyses to assess the association between baseline low LDL-C levels and long-term all-cause mortality. RESULTS: Among 803 participants (mean age 67.4 years; 68.5% male), there were 315 incidents of all-cause death during a median follow-up of 2.7 years. Kaplan-Meier analysis showed that low LDL-C levels were associated with worse prognosis. After adjusting for full 24 confounders (e.g., age, diabetes, heart failure, and dialysis, etc.), multivariate Cox regression analysis revealed that lower LDL-C level (< 1.8 mmol/L) was significantly associated with higher risk of all-cause death (adjusted HR, 1.38; 95% CI, 1.01-1.89). CONCLUSIONS: Our data demonstrated that among patients with CAD and AKD, a lower baseline LDL-C level (< 1.8 mmol/L) did not present a higher survival rate but was related to a worse prognosis, suggesting a cautiousness of too low LDL-C levels among patients with CAD and AKD.

Thematic Analysis of Hospice Mentions in the Health Records of Veterans with Advanced Kidney Disease.

BACKGROUND: Patients with advanced kidney disease are less likely than many patients with other types of serious illness to enroll in hospice. Little is known about real-world clinical decision-making related to hospice for members of this population. METHODS: We used a text search tool to conduct a thematic analysis of documentation pertaining to hospice in the electronic medical record system of the Department of Veterans Affairs, for a national sample of 1000 patients with advanced kidney disease between 2004 and 2014 who were followed until October 8, 2019. RESULTS: Three dominant themes emerged from our qualitative analysis of the electronic medical records of 340 cohort members with notes containing hospice mentions: (1) hospice and usual care as antithetical care models: clinicians appeared to perceive a sharp demarcation between services that could be provided under hospice versus usual care and were often uncertain about hospice eligibility criteria. This could shape decision-making about hospice and dialysis and made it hard to individualize care; (2) hospice as a last resort: patients often were referred to hospice late in the course of illness and did not so much choose hospice as accept these services after all treatment options had been exhausted; and (3) care complexity: patients' complex care needs at the time of hospice referral could complicate transitions to hospice, stretch the limits of home hospice, and promote continued reliance on the acute care system. CONCLUSIONS: Our findings underscore the need to improve transitions to hospice for patients with advanced kidney disease as they approach the end of life.

Obesity-related indices are associated with albuminuria and advanced kidney disease in type 2 diabetes mellitus.

Obesity is an important risk factor for the development of diseases including diabetes, hypertension, and cardiovascular disease. However, few reports have investigated the relationships between these obesity-related indices and diabetic nephropathy. The aim of this study was to evaluate associations between obesity-related markers with albuminuria and advanced kidney disease in patients with type 2 diabetes mellitus (DM). Obesity-related indices including body mass index (BMI), waist-to-hip ratio (WHR), waist-to-height ratio (WHtR), body roundness index (BRI), conicity index (CI), lipid accumulation product (LAP), visceral adiposity index (VAI), body adiposity index (BAI), abdominal volume index (AVI), body shape index (BSI), and triglyceride glucose (TyG) index were measured. Albuminuria was defined as a urine albumin/creatinine ratio of ≥30 mg/g. Advanced kidney disease was defined as an estimated glomerular filtration rate (eGFR) <30 ml/min/1.73 m2. A total of 1872 patients with type 2 DM (mean age 64.0 ± 11.3 years, 809 males and 1063 females) were enrolled. In multivariable analysis, 11 high obesity-related indices (BMI, WHR, WHtR, LAP, BRI, CI, VAI, BAI, AVI, ABSI, and TyG index) were significantly associated with albuminuria. In addition, high BMI, WHR, WHtR, LAP, BRI, CI, VAI, and AVI were significantly associated with eGFR <30 ml/min/1.73 m2. The results of this study showed that various obesity-related indices were significantly associated with albuminuria and advanced kidney disease in patients with type 2 DM. Screening may be considered in public health programs to recognize and take appropriate steps to prevent subsequent complications.

Advance care planning and end-of-life decision making in dialysis: a randomized controlled trial targeting patients and their surrogates.

BACKGROUND: Few trials have examined long-term outcomes of advance care planning (ACP) interventions. We examined the efficacy of an ACP intervention on preparation for end-of-life decision making for dialysis patients and surrogates and for surrogates' bereavement outcomes. STUDY DESIGN: A randomized trial compared an ACP intervention (Sharing Patient's Illness Representations to Increase Trust [SPIRIT]) to usual care alone, with blinded outcome assessments. SETTING & PARTICIPANTS: 420 participants (210 dyads of prevalent dialysis patients and their surrogates) from 20 dialysis centers. INTERVENTION: Every dyad received usual care. Those randomly assigned to SPIRIT had an in-depth ACP discussion at the center and a follow-up session at home 2 weeks later. PRIMARY OUTCOMES: preparation for end-of-life decision making, assessed for 12 months, included dyad congruence on goals of care at end of life, patient decisional conflict, surrogate decision-making confidence, and a composite of congruence and surrogate decision-making confidence. SECONDARY OUTCOMES: bereavement outcomes, assessed for 6 months, included anxiety, depression, and posttraumatic distress symptoms completed by surrogates after patient death. PRIMARY OUTCOMES: adjusting for time and baseline values, dyad congruence (OR, 1.89; 95% CI, 1.1-3.3), surrogate decision-making confidence (ß=0.13; 95% CI, 0.01-0.24), and the composite (OR, 1.82; 95% CI, 1.0-3.2) were better in SPIRIT than controls, but patient decisional conflict did not differ between groups (ß=-0.01; 95% CI, -0.12 to 0.10). SECONDARY OUTCOMES: 45 patients died during the study. Surrogates in SPIRIT had less anxiety (ß=-1.13; 95% CI, -2.23 to -0.03), depression (ß=-2.54; 95% CI, -4.34 to -0.74), and posttraumatic distress (ß=-5.75; 95% CI, -10.9 to -0.64) than controls. LIMITATIONS: Study was conducted in a single US region. CONCLUSIONS: SPIRIT was associated with improvements in dyad preparation for end-of-life decision making and surrogate bereavement outcomes.

Determinants of quality of life in advanced kidney disease: time to screen?

The incidence of older patients with end stage renal disease is on the increase. This group of patients have multiple comorbidities and a high symptom burden. Dialysis can be life sustaining for such patients. But it is often at the expense of quality of life, which starts to decline early in the pathway of chronic kidney disease. Quality of life is also important to patients and is a major determinant in decisions regarding renal replacement. As a result, validated patient-reported outcome measures are increasingly used to assess quality of life in renal patients. Cognitive impairment, depression, malnutrition and function decline are non-renal determinants of quality of life and mortality. They are under-recognised in the renal population but are potentially treatable, if not preventable. This review article discusses aetio-pathogenesis, prevalence and impact of these four outcomes, advocating regular screening for early identification and management.

Comparison of safety and efficacy between Nirmatrelvir-ritonavir and molnupiravir in the treatment of COVID-19 infection in patients with advanced kidney disease: a retrospective observational study.

Background: Nirmatrelvir-ritonavir is used in patients with coronavirus disease 2019 (COVID-19) with normal or mild renal impairment (eGFR ≥30 ml/min per 1.73 m2). There is limited data regarding its use in advanced kidney disease (eGFR <30 ml/min per 1.73 m2). We performed a retrospective territory-wide observational study evaluating the safety and efficacy of nirmatrelvir-ritonavir when compared with molnupiravir in the treatment of patients with COVID-19 with advanced kidney disease. Methods: We adopted target trial emulation using data from a territory-wide electronic health record database on eligible patients aged ≥18 years with advanced kidney disease (history of eGFR <30 ml/min per 1.73 m2) who were infected with COVID-19 and were prescribed with either molnupiravir or nirmatrelvir-ritonavir within five days of infection during the period from 16 March 2022 to 31 December 2022. A sequence trial approach and 1:4 propensity score matching was applied based on the baseline covariates including age, sex, number of COVID-19 vaccine doses received, Charlson comorbidity index (CCI), hospitalisation, eGFR, renal replacement therapy, comorbidities (cancer, respiratory disease, myocardial infarction, ischaemic stroke, diabetes, hypertension), and drug use (renin-angiotensin-system agents, beta blockers, calcium channel blockers, diuretics, nitrates, lipid lowering agents, insulins, oral antidiabetic drugs, antiplatelets, immuno-suppressants, corticosteroids, proton pump inhibitors, histamine H2 receptor antagonists, monoclonal antibody infusion) within past 90 days. Individuals were followed up from the index date until the earliest outcome occurrence, death, 90 days from index date or the end of data availability. Stratified Cox proportional hazards regression adjusted with baseline covariates was used to compare the risk of outcomes between nirmatrelvir-ritonavir recipients and molnupiravir recipients which include (i) all-cause mortality, (ii) intensive care unit (ICU) admission, (iii) ventilatory support, (iv) hospitalisation, (v) hepatic impairment, (vi) ischaemic stroke, and (vii) myocardial infarction. Subgroup analyses included age (<70; ≥70 years); sex, Charlson comorbidity index (≤5; >5), and number of COVID-19 vaccine doses received (0-1; ≥2 doses). Findings: A total of 4886 patients were included (nirmatrelvir-ritonavir: 1462; molnupiravir: 3424). There were 347 events of all-cause mortality (nirmatrelvir-ritonavir: 74, 5.06%; molnupiravir: 273, 7.97%), 10 events of ICU admission (nirmatrelvir-ritonavir: 4, 0.27%; molnupiravir: 6, 0.18%), 48 events of ventilatory support (nirmatrelvir-ritonavir: 13, 0.89%; molnupiravir: 35, 1.02%), 836 events of hospitalisation (nirmatrelvir-ritonavir: 218, 23.98%; molnupiravir: 618, 28.14%), 1 event of hepatic impairment (nirmatrelvir-ritonavir: 0, 0%; molnupiravir: 1, 0.03%), 8 events of ischaemic stroke (nirmatrelvir-ritonavir: 3, 0.22%; molnupiravir: 5, 0.16%) and 9 events of myocardial infarction (nirmatrelvir-ritonavir: 2, 0.15%; molnupiravir: 7, 0.22%). Nirmatrelvir-ritonavir users had lower rates of all-cause mortality (absolute risk reduction (ARR) at 90 days 2.91%, 95% CI: 1.47-4.36%) and hospitalisation (ARR at 90 days 4.16%, 95% CI: 0.81-7.51%) as compared with molnupiravir users. Similar rates of ICU admission (ARR at 90 days -0.09%, 95% CI: -0.4 to 0.2%), ventilatory support (ARR at 90 days 0.13%, 95% CI: -0.45 to 0.72%), hepatic impairment (ARR at 90 days 0.03%, 95% CI: -0.03 to 0.09%), ischaemic stroke (ARR at 90 days -0.06%, 95% CI: -0.35 to 0.22%), and myocardial infarction (ARR at 90 days 0.07%, 95% CI: -0.19 to 0.33%) were found between nirmatrelvir-ritonavir and molnupiravir users. Consistent results were observed in relative risk adjusted with baseline characteristics. Nirmatrelvir-ritonavir was associated with significantly reduced risk of all-cause mortality (HR: 0.624, 95% CI: 0.455-0.857) and hospitalisation (HR: 0.782, 95% CI: 0.64-0.954). Interpretation: Patients with COVID-19 with advanced kidney disease receiving nirmatrelvir-ritonavir had a lower rate of all-cause mortality and hospital admission when compared with molnupiravir. Other adverse clinical outcomes were similar in both treatment groups. Funding: Health and Medical Research Fund (COVID1903010), Health Bureau, The Government of the Hong Kong Special Administrative Region, China.

Renin-Angiotensin Inhibition and Outcomes in HFrEF and Advanced Kidney Disease.

BACKGROUND: Renin-angiotensin system inhibitors improve outcomes in patients with heart failure with reduced ejection fraction (HFrEF). However, less is known about their effectiveness in patients with HFrEF and advanced kidney disease. METHODS: In the Medicare-linked Organized Program to Initiate Lifesaving Treatment in Hospitalized Patients with Heart Failure (OPTIMIZE-HF), 1582 patients with HFrEF (ejection fraction ≤40%) had advanced kidney disease (estimated glomerular filtration rate <30 mL/min/1.73 m2). Of these, 829 were not receiving angiotensin-converting enzyme (ACE) inhibitors or angiotensin receptor blockers (ARBs) prior to admission, of whom 214 were initiated on these drugs prior to discharge. We calculated propensity scores for receipt of these drugs for each of the 829 patients and assembled a matched cohort of 388 patients, balanced on 47 baseline characteristics (mean age 78 years; 52% women; 10% African American; 73% receiving beta-blockers). Hazard ratios (HR) and 95% confidence intervals (CI) were estimated comparing 2-year outcomes in 194 patients initiated on ACE inhibitors or ARBs to 194 patients not initiated on those drugs. RESULTS: The combined endpoint of heart failure readmission or all-cause mortality occurred in 79% and 84% of patients initiated and not initiated on ACE inhibitors or ARBs, respectively (HR associated with initiation, 0.79; 95% CI, 0.63-0.98). Respective HRs (95% CI) for the individual endpoints of - Respective HRs (95% CI) for the individual endpoints of all-cause mortality and heart failure readmission were 0.81 (0.63-1.03) and 0.63 (0.47-0.85). CONCLUSIONS: The findings from our study add new information to the body of cumulative evidence that suggest that renin-angiotensin system inhibitors may improve clinical outcomes in patients with HFrEF and advanced kidney disease. These hypothesis-generating findings need to be replicated in contemporary patients.

Patient information about living donor kidney transplantation across UK renal units: A critical review.

BACKGROUND: Patient information about living donor kidney transplantation is used to supplement conversations between health professionals, people with advanced kidney disease and potential kidney donors. It is not known if the information is designed to support decision-making about renal replacement options and if it helps people discuss living kidney donation with family and friends. OBJECTIVE: Critical review of resources used in outpatient kidney consultations to support patients' decision-making about living kidney donor transplantation. DESIGN: Mixed methods including an audit questionnaire and critical analysis of patient information leaflets. PARTICIPANTS AND MEASUREMENTS: All kidney transplant centres and renal units in United Kingdom received a questionnaire to elicit by whom, how, and when information about living kidney donation is delivered. Copies of leaflets were requested. A coding frame was utilised to produce a quality score for each leaflet. RESULTS: Thirty-nine (54%) units participated. Patients discussed living donor kidney transplantation with nephrologists (100%), living donor nurse (94%), transplant co-ordinator (94%), and predialysis nurse (86%). Twenty-three leaflets were provided and reviewed, mean quality scores for inclusion of information known to support shared decision-making was m = 2.82 out of 10 (range = 0-6, SD = 1.53). Readability scores indicated they were 'fairly difficult to read' (M = 56.3, range = 0-100, SD = 9.4). Few included cultural and faith information. Two leaflets were designed to facilitate conversations with others about donation. CONCLUSIONS: Leaflets are unlikely to adequately support decision-making between options and discussions about donation. Services writing and updating patient leaflets may benefit from our six principles to guide their development.

Using Human-Centered Design Principles to Create a Decision Aid on Conservative Kidney Management for Advanced Kidney Disease.

Background: Most patients are unaware of approaches to treating advanced chronic kidney disease (CKD) other than dialysis. Methods: We developed a dedicated decision aid on conservative kidney management using human-centered design principles in three phases: (1) discovery: engagement of informants to understand their needs and preferences; (2) design: multiple rapid cycles of ideation, prototyping, and testing of a decision aid with a small group of informants; and (3) implementation: testing the decision aid in real-world settings with attention to how the decision aid can be further refined. Informants included a national patient advisory committee on kidney diseases, 50 patients with stage 4 or 5 CKD and 35 of their family members, and 16 clinicians recruited from the greater Seattle area between June 2019 and September 2021. Results: Findings from the discovery phase informed an initial prototype of the decision aid, which included five sections: a description of kidney disease and its signs and symptoms, an overview of conservative kidney management and the kinds of supports provided, self-reflection exercises to elicit patients' values and goals, the pros and cons of conservative kidney management, and the option of changing one's mind about conservative kidney management. The prototype underwent several rounds of iteration during its design phase, which resulted in the addition of an introductory section describing the intended audience and more detailed information in other sections. Findings from its implementation phase led to the addition of examples of common questions that patients and family members had about conservative kidney management and a final section on other related educational resources. Conclusions: Human-centered design principles supported a systematic and collaborative approach between researchers, patients, family members, and clinicians for developing a decision aid on conservative kidney management.

Advanced Chronic Kidney Disease in Lupus Nephritis: Is Dialysis Inevitable?

OBJECTIVE: Advanced chronic kidney disease (CKD) carries an increased risk for progression to endstage renal disease (ESRD). We aimed to determine the rate of progression and the factors that drive the decline of renal function in lupus nephritis (LN). METHODS: Patients with advanced LN-related CKD were identified from our longterm longitudinal cohort. Advanced CKD was defined as stage 3b [estimated glomerular filtration rate (eGFR) = 30-44 ml/min/1.73 m2] and stage 4 (eGFR = 15-29 ml/min/1.73 m2). All individuals were followed until progression to ESRD or the last visit and were divided into "progressors" and "non- progressors." Demographic, clinical, immunological, and therapeutic variables were compared at baseline. Multivariable Cox regression analysis (both time-dependent and independent) was performed to identify predictors for progression. RESULTS: One hundred eighteen patients (74 CKD 3b and 44 CKD 4) were included. Forty-five patients progressed (29 to ESRD and 16 from CKD 3b to CKD 4) after 6 years on average. No significant decline in the renal function was observed in 73 patients ("non-progressors") after 10 years on average. Active serology (high anti-dsDNA titers and low complements C3/C4) at the time of CKD diagnosis and any increase of the daily prednisone dose after baseline were strongly associated with progression. Treatment with renin angiotensin system (RAS) blockers was associated with less risk for progression. CONCLUSION: Dialysis is not inevitable in LN-related advanced CKD because 62% of our patients did not progress over 10 years of followup on average. Certain predictors were identified to affect progression to ESRD.

Association of dialysis-requiring acute kidney injury with 90-day prognosis in patients with coronary artery disease and advanced kidney disease after coronary angiography.

BACKGROUND: Dialysis-requiring acute kidney injury (AKI-D) is a potentially serious complication associated with high in-hospital mortality among patients with coronary artery disease (CAD) after coronary angiography (CAG). Patients with existing advanced kidney disease (AKD) have an increased risk of developing AKI-D. However, few studies have investigated the prognosis of AKI-D in patients with both CAD and AKD. METHODS: In this observational study, 603 CAD patients with AKD (estimated glomerular filtration rate, eGFR <30 mL/min/1.73 m2) were enrolled. AKI-D was defined as acute or worsening renal failure requiring the initiation of renal dialysis. The primary endpoint was 90-day all-cause mortality. Kaplan-Meier and Cox regression analyses were used to assess the association of AKI-D and 90-day all-cause mortality among CAD patients complicated with AKD. RESULTS: Overall, among 603 CAD patients complicated with AKD, 83 patients (13.8%) required AKI-D. Patients underwent AKI-D had a significantly higher rate of 90-day mortality than those who did not (13.3% vs. 6.5%, log rank P=0.028), with an unadjusted hazard ratio (HR) of 1.28 [95% confidence interval (CI): 1.02-1.61, P=0.032]. After adjustment for cardiac and renal impairment, however, AKI-D was no longer associated with 90-day mortality (HR: 1.08, 95% CI: 0.84-1.39, P=0.559). The attenuation analysis showed that after adjustment for cardiac and renal function, the residual effect of 90-day mortality was as low as 30% of the unadjusted effect. CONCLUSIONS: The incidence of AKI-D is high among patients with CAD complicated by AKD. The high 90-day mortality rate of patients undergoing AKI-D is mainly attributable to cardio-renal impairment.

Shared decision-making in advanced kidney disease: a scoping review protocol.

INTRODUCTION: Patients with advanced kidney disease (AKD) have to make difficult treatment modality decisions as their disease progresses towards end-stage kidney disease. International guidelines in nephrology suggest shared decision-making (SDM) to help patients make timely treatment modality decisions that align with their values and preferences. However, systematic reviews or scoping reviews on these SDM interventions and on their reported use or outcomes are lacking. This limits the adoption of SDM in clinical practice and hampers further research and development on the subject. Our aim is to provide a comprehensive and up-to-date overview of these SDM interventions by means of a scoping review of the literature. Scoping reviews can provide a broad overview of a topic, identify gaps in the research knowledge base and report on the types of evidence that address and inform practices. This paper presents our study protocol. METHODS AND ANALYSIS: The proposed scoping review will be performed in accordance with the Joanna Briggs Institute's (JBI) methodology for scoping reviews. It will cover both qualitative and quantitative scientific literature, as well as the grey literature on SDM interventions for treatment modality decisions in AKD. Only literature written in English will be considered for inclusion. Two independent reviewers will participate in an iterative process of screening the literature, paper selection and data extraction. Disagreements between the reviewers will be resolved by discussion until consensus is reached or after consultation with the research team when needed. Results will be reported with descriptive statistics and diagrammatic or tabular displayed information, accompanied by narrative summaries as explained in the JBI guidelines. ETHICS AND DISSEMINATION: Ethical approval for the conduct of this study is not required. We will analyse previously collected data for the proposed scoping review. Our results will be published in a peer-reviewed journal and disseminated through conferences and/or seminars.

Impact of chronic kidney disease on in-hospital outcomes following left ventricular assist device placement: A national perspective.

BACKGROUND: Left ventricular assist devices (LVADs) are being increasingly utilized for the treatment of stage-D heart failure. A LVAD is a battery-operated, mechanical pump that assists in pumping blood out of the left ventricle (LV) into the aorta, thereby lowering left ventricular burden. Prevalence of chronic kidney disease (CKD) is increasing in patients receiving LVAD. OBJECTIVES: The purpose of this study was to compare in-hospital mortality and hospitalization expenditure associated with CKD in patients receiving LVAD implantation. METHODS: Using the National Inpatient Sample from January 2012 through September 2015, index hospitalizations for LVAD were identified. Based on kidney function, LVAD recipients were divided into three groups: Group 1 included patients with normal renal function or CKD stages I-III. Groups 2 and 3 comprised of patients with CKD stage IV/V, and end-stage renal disease on dialysis respectively. RESULTS: A total of 20,656 patients received LVAD during the study period. Mean age was 56.1 years; 76.8% were men. In a fully adjusted model, in-hospital mortality was higher in group 2 (OR: 1.33, CI: 1.16-1.50) and highest in group 3 (OR: 8.95, CI: 6.90-11.61). Similarly, the length of hospitalization, and hospitalization cost were higher in group 2 and highest in group 3. CONCLUSION: Despite improving outcomes in patients receiving LVAD, CKD remained a significant health problem. Worsening in-hospital outcomes paralleling the degree of kidney dysfunction were observed in patients receiving LVADs in this study.

Emotional Impact of Illness and Care on Patients with Advanced Kidney Disease.

BACKGROUND AND OBJECTIVES: The highly specialized and technologically focused approach to care inherent to many health systems can adversely affect patients' emotional experiences of illness, while also obscuring these effects from the clinician's view. We describe what we learned from patients with advanced kidney disease about the emotional impact of illness and care. DESIGN, SETTING, PARTICIPANTS, & MEASUREMENTS: As part of an ongoing study on advance care planning, we conducted semistructured interviews at the VA Puget Sound Healthcare System in Seattle, Washington, with 27 patients with advanced kidney disease between April of 2014 and May of 2016. Of these, ten (37%) were receiving center hemodialysis, five (19%) were receiving peritoneal dialysis, and 12 (44%) had an eGFR≤20 ml/min per 1.73 m2 and had not started dialysis. Interviews were audiotaped, transcribed, and analyzed inductively using grounded theory methods. RESULTS: We here describe three emergent themes related to patients' emotional experiences of care and illness: (1) emotional impact of interactions with individual providers: when providers seemed to lack insight into the patient's experience of illness and treatment, this could engender a sense of mistrust, abandonment, isolation, and/or alienation; (2) emotional impact of encounters with the health care system: just as they could be affected emotionally by interactions with individual providers, patients could also be affected by how care was organized, which could similarly lead to feelings of mistrust, abandonment, isolation, and/or alienation; and (3) emotional impact of meaning-making: patients struggled to make sense of their illness experience, worked to apportion blame, and were often quick to blame themselves and to assume that their illness could have been prevented. CONCLUSIONS: Interactions with individual providers and with the wider health system coupled with patients' own struggles to make meaning of their illness can take a large emotional toll. A deeper appreciation of patients' emotional experiences may offer important opportunities to improve care.

Patient perspectives on the optimal start of renal replacement therapy.

BACKGROUND: Healthcare systems and providers are encouraged to prepare their patients with advanced chronic kidney disease (CKD) for a planned start to renal replacement therapies (RRT). Less well understood are the socioemotional experiences surrounding the optimal start of RRT versus suboptimal haemodialysis (HD) starts with a central catheter. OBJECTIVES: To characterise the experiences of patients beginning RRT. DESIGN: Qualitative, semi-structured phone interviews. PARTICIPANTS: A total of 168 patients with stage 5 CKD initiating RRT in an integrated, capitated learning healthcare system. APPROACH: Qualitative data from patients were collected as part of a quality improvement initiative to better understand patient-reported themes concerning preparation for RRT, patients' perceptions of their transition to dialysis and why sub-optimal starts for RRT occur within our healthcare system. Dual review and verification was used to identify key phrases and themes within and across each domain, using both deductive a priori codes generated by the interview guide and grounded discovery of emergent themes. RESULTS: From the patient perspective, preparing for RRT is an experience rooted in deep feelings of fear. In addition, a number of key factors contributed to patients' preparation (or failure to prepare) for RRT. While the education provided by our system was viewed as adequate overall, patients often felt that their emotional and psychosocial needs went unmet, regardless of whether or not, they experienced an optimal dialysis start. CONCLUSIONS: Future efforts should incorporate additional strategies for helping patients with advanced CKD achieve emotional and psychological safety while preparing for RRT.

"Maybe They Don't Even Know That I Exist": Challenges Faced by Family Members and Friends of Patients with Advanced Kidney Disease.

BACKGROUND AND OBJECTIVES: Family members and friends of patients with advanced chronic illness are increasingly called on to assist with ever more complex medical care and treatment decisions arising late in the course of illness. Our goal was to learn about the experiences of family members and friends of patients with advanced kidney disease. DESIGN, SETTING, PARTICIPANTS, & MEASUREMENTS: As part of a study intended to identify opportunities to enhance advance care planning, we conducted semistructured interviews at the Veterans Affairs Puget Sound Health Care System with 17 family members and friends of patients with advanced kidney disease. Interviews were conducted between April of 2014 and May of 2016 and were audiotaped, transcribed, and analyzed inductively using grounded theory to identify emergent themes. RESULTS: The following three themes emerged from interviews with patients' family members and friends: (1) their roles in care and planning were fluid over the course of the patient's illness, shaped by the patients' changing needs and their readiness to involve those close to them; (2) their involvement in patients' care was strongly shaped by health care system needs. Family and friends described filling gaps left by the health care system and how their involvement in care and decision-making was at times constrained and at other times expected by providers, depending on system needs; and (3) they described multiple sources of tension and conflict in their interactions with patients and the health care system, including instances of being pitted against the patient. CONCLUSIONS: Interviews with family members and friends of patients with advanced kidney disease provide a window on the complex dynamics shaping their engagement in patients' care, and highlight the potential value of offering opportunities for engagement throughout the course of illness.

Supportive Care: Communication Strategies to Improve Cultural Competence in Shared Decision Making.

Historic migration and the ever-increasing current migration into Western countries have greatly changed the ethnic and cultural patterns of patient populations. Because health care beliefs of minority groups may follow their religion and country of origin, inevitable conflict can arise with decision making at the end of life. The principles of truth telling and patient autonomy are embedded in the framework of Anglo-American medical ethics. In contrast, in many parts of the world, the cultural norm is protection of the patient from the truth, decision making by the family, and a tradition of familial piety, where it is dishonorable not to do as much as possible for parents. The challenge for health care professionals is to understand how culture has enormous potential to influence patients' responses to medical issues, such as healing and suffering, as well as the physician-patient relationship. Our paper provides a framework of communication strategies that enhance crosscultural competency within nephrology teams. Shared decision making also enables clinicians to be culturally competent communicators by providing a model where clinicians and patients jointly consider best clinical evidence in light of a patient's specific health characteristics and values when choosing health care. The development of decision aids to include cultural awareness could avoid conflict proactively, more productively address it when it occurs, and enable decision making within the framework of the patient and family cultural beliefs.

End-of-life care in advanced kidney disease: ethical and legal issues and key challenges for black and minority ethnic groups.

Advances in modern medical technology have gone so far that it is now possible for machinery to keep people alive. To some extent this has led to a misperception in society that death can almost always be postponed because life-sustaining extracorporeal machinery of some sort or another, for example a dialysis machine, can prevent it. However, for some, being kept alive connected to a dialysis machine for four hours three times a week does not represent or even come close to an existence or quality of life they consider valuable. It may even cause unnecessary distress. This may be because they have reached a point at the end of their lives where they would like the focus of their treatment or care to become that which enables them to live as well as possible until they die. In these circumstances treatment and care should properly be that which enables the supportive and palliative care needs of both patient and family to be identified and met throughout the last phase of life and into bereavement. Identifying and acknowledging the importance of such a paradigm shift in the delivery of healthcare, and above all facilitating it, includes taking on the responsibility, incumbent upon us all, to address the ethical issues that are brought into focus. In this paper, I examine some of these issues. I consider the ways in which underlying theoretical ethical principles have informed the development of professional guidance and highlight the dynamic relationship this guidance has with the law. Finally, I demonstrate the ways in which it can be usefully applied to inform and assist clinical decision-making. Key challenges for BAME groups are addressed.