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Prospective cohort studies of kidney equity are limited by a focus on advanced rather than early disease and selective recruitment. Whole population studies frequently rely on area-level measures of deprivation as opposed to individual measures of social disadvantage. Here, we linked kidney health and individual census records in the North of Scotland (Grampian area), 2011-2021 (GLOMMS-CORE) and identified incident kidney presentations at thresholds of estimated glomerular filtration rate (eGFR) under 60 (mild/early), under 45 (moderate), under 30 ml/min/1.73m 2 (advanced), and acute kidney disease (AKD). Household and neighborhood socioeconomic measures, living circumstances, and long-term mortality were compared. Case-mix adjusted multivariable logistic regression (living circumstances), and Cox models (mortality) incorporating an interaction between the household and the neighborhood were used. Among census respondents, there were 48546, 29081, 16116, 28097 incident presentations of each respective eGFR cohort and AKD. Classifications of socioeconomic position by household and neighborhood were related but complex, and frequently did not match. Compared to households of professionals, people with early kidney disease in unskilled or unemployed households had increased mortality (adjusted hazard ratios: 95% confidence intervals) of (1.26: 1.19-1.32) and (1.77: 1.60-1.96), respectively with adjustment for neighborhood indices making little difference. Those within either a deprived household or deprived neighborhood experienced greater mortality, but those within both had the poorest outcomes. Unskilled and unemployed households frequently reported being limited by illness, adverse mental health, living alone, basic accommodation, lack of car ownership, language difficulties, and visual and hearing impairments. Thus, impacts of deprivation on kidney health are spread throughout society-complex, serious, and not confined to those living in deprived neighborhoods., (Copyright © 2024 International Society of Nephrology. Published by Elsevier Inc. All rights reserved.)

Background: Treatment strategies for BK polyomavirus (BKPyV) infection in kidney transplant recipients are heterogeneous among clinicians. We aimed to identify the treatment preferences of key stakeholders for BKPyV infection and measure the trade-offs between treatment outcomes., Methods: Adult kidney transplant recipients, caregivers, and clinicians were eligible to participate in a discrete choice experiment between February 2021 and June 2022. The five treatment-related attributes were achieving viral clearance and optimal graft function, as well as reducing the risk of graft loss, acute rejection, and complications. Results were analyzed using multinomial logistic models., Results: In total, 109 participants (57 kidney transplant recipients, 10 caregivers, and 42 health professionals) were included. The most important attribute was the risk of graft loss, followed by side effects and acute rejection. As the risk of graft loss increased, all participants were less inclined to accept an assigned treatment strategy. For instance, if graft loss risk was increased from 1% to 50%, the probability of uptake of a treatment strategy for BKPyV infection was reduced from 87% to 3%., Conclusion: Graft loss is the predominant concern for patients, caregivers, and health professionals when deciding on the treatment for BKPyV infection, and should be included in intervention trials of BKPyV infection., (© 2024 Wiley Periodicals LLC.)

Patient and caregiver involvement can enhance the uptake and impact of research, but the involvement of patients and caregivers who are underserved and marginalized is often limited. A better understanding of how to make involvement in research more broadly accessible, supportive, and inclusive for patients with chronic kidney disease (CKD) and caregivers is needed. We conducted a national workshop involving patients, caregivers, clinicians, and researchers from across Australia to identify strategies to increase the diversity of patients and caregivers involved in CKD research. Six themes were identified. Building trust and a sense of safety was considered pivotal to establishing meaningful relationships to support knowledge exchange. Establishing community and connectedness was expected to generate a sense of belonging to motivate involvement. Balancing stakeholder goals, expectations, and responsibilities involved demonstrating commitment and transparency by researchers. Providing adequate resources and support included strategies to minimize the burden of involvement for patients and caregivers. Making research accessible and relatable was about nurturing patient and caregiver interest by appealing to intrinsic motivators. Adapting to patient and caregiver needs and preferences required tailoring the approach for individuals and the target community. Strategies and actions to support these themes may support more diverse and equitable involvement of patients and caregivers in research in CKD., (Copyright © 2024 National Kidney Foundation, Inc. Published by Elsevier Inc. All rights reserved.)

Background: Caregivers of children with chronic kidney disease (CKD) in low resource settings must provide complex medical care at home while being burdened by treatment costs often paid out-of-pocket. We hypothesize that caregiver burden in our low resource setting is greater than reported from high income countries and is associated with frequent catastrophic healthcare expenditure (CHE)., Methods: We conducted a mixed-methods study of primary caregivers of children with advanced CKD (stage 3b-5) in our private-sector referral hospital in a low resource setting. We assessed caregiver burden using the Pediatric Renal Caregiver Burden Scale (PRCBS) and measured financial burden by calculating the proportion of caregivers who experienced CHE (monthly out-of-pocket healthcare expenditure exceeding 10% of total household monthly expenditure). We performed a qualitative reflexive thematic analysis of caregiver interviews to explore sources of burden., Results: Of the 45 caregivers included, 35 (78%) had children on maintenance dialysis (25 PD, 10 HD). Mean caregiver burden score was 141 (± 17), greater than previously reported. On comparative analysis, PRCBS scores were higher among caregivers of children with kidney failure (p = 0.005), recent hospitalization (p = 0.03), non-earning caregivers (p = 0.02), caring for > 2 dependents (p = 0.009), and with high medical expenditure (p = 0.006). CHE occurred in 43 (96%) caregivers of whom 37 (82%) paid out-of-pocket. The main themes derived relating to caregiver burden were severe financial burden, mental stress and isolation, and perpetual burden of concern., Conclusion: Parents of children with CKD experienced severe caregiver burden with frequent CHE and relentless financial stress indicating an imminent need for social support interventions., (© 2024. The Author(s), under exclusive licence to International Pediatric Nephrology Association.)

Background: Many outcomes of high priority to patients and clinicians are infrequently and inconsistently reported across trials in chronic kidney disease (CKD), which generates research waste and limits evidence-informed decision making. We aimed to generate consensus among patients/caregivers and health professionals on critically important outcomes for trials in CKD prior to kidney failure and the need for kidney replacement therapy, and to describe the reasons for their choices., Methods: This was an online two-round international Delphi survey. Adult patients with CKD (all stages and diagnoses), caregivers and health professionals who could read English, Spanish or French were eligible. Participants rated the importance of outcomes using a Likert scale (7-9 indicating critical importance) and a Best-Worst Scale. The scores for the two groups were assessed to determine absolute and relative importance. Comments were analysed thematically., Results: In total, 1399 participants from 73 countries completed Round 1 of the Delphi survey, including 628 (45%) patients/caregivers and 771 (55%) health professionals. In Round 2, 790 participants (56% response rate) from 63 countries completed the survey including 383 (48%) patients/caregivers and 407 (52%) health professionals. The overall top five outcomes were: kidney function, need for dialysis/transplant, life participation, cardiovascular disease and death. In the final round, patients/caregivers indicated higher scores for most outcomes (17/22 outcomes), and health professionals gave higher priority to mortality, hospitalization and cardiovascular disease (mean difference >0.3). Consensus was based upon the two groups yielding median scores of ≥7 and mean scores >7, and the proportions of both groups rating the outcome as 'critically important' being >50%. Four themes reflected the reasons for their priorities: imminent threat of a health catastrophe, signifying diminishing capacities, ability to self-manage and cope, and tangible and direct consequences., Conclusion: Across trials in CKD, the outcomes of highest priority to patients, caregivers and health professionals were kidney function, need for dialysis/transplant, life participation, cardiovascular disease and death., (© The Author(s) 2024. Published by Oxford University Press on behalf of the ERA.)

Objectives: The involvement of consumers (people with lived experience of disease) in guidelines is widely advocated to improve their relevance and uptake. However, the approaches to consumer involvement in guidelines vary and are not well documented. We describe the consumer involvement framework of Caring for Australians and New ZealandeRs with kidney Impairment Guidelines., Study Design and Setting: We used a descriptive document analysis to collate all relevant policies, documents, e-mails, and presentations on consumer involvement in our organizations. We performed a narrative synthesis of collated data to summarize our evolving consumer involvement approach in guidelines., Results: We involve consumers at all levels of Caring for Australians and New ZealandeRs with kidney Impairment guideline development and dissemination according to their capacity, from conducting consumer workshops to inform the scope of guidelines, to including consumers as members of the guideline Working Groups and overseeing operations and governance as members of the Steering Committee and staff. Our approach has resulted in tangible outcomes including high-priority topics on patient education, psychosocial care, and clinical care pathways, and focusing the literature reviews to assess patient-important outcomes. The ongoing partnership with consumers led to the generation of consumer version guidelines to improve guideline dissemination and translation to support shared decision-making., Conclusion: Meaningful consumer involvement can be achieved through a comprehensive approach across the entire lifecycle of guidelines. However, it must be individualized by ensuring that the involvement of consumers is timely and flexible. Future work is needed to assess the impact of consumer involvement in guideline development., Competing Interests: Declaration of competing interest None relevant., (Copyright © 2024 The Author(s). Published by Elsevier Inc. All rights reserved.)

The outcomes reported in trials across all stages of chronic kidney disease (CKD) are highly variable and often do not include outcomes that are directly relevant to patients and caregivers. Frequently, the outcomes reported in trials are often unvalidated surrogate biochemical end points. The omission of outcomes that are meaningful and important to patients can diminish the value of trials in supporting treatment decisions. In response, there have been increasing efforts across many health and medical disciplines to develop core outcome sets, defined as the minimum set of outcomes to be reported in all trials in a specific health area to improve the relevance and consistency of reporting trial outcomes. The international Standardized Outcomes in Nephrology (SONG) initiative was established in 2014 and has since developed seven core outcome sets for different diagnosis and treatment stages of CKD. The core outcomes were based on consensus among patients, caregivers, and health professionals. Each core outcome set includes at least one patient-reported outcome, including fatigue (hemodialysis), life participation (kidney transplantation, peritoneal dialysis, early CKD not yet requiring kidney replacement therapy, children and adolescents, and glomerular disease), and pain (polycystic kidney disease). This article outlines how patient-reported outcomes are currently reported in trials, discusses core patient-reported outcomes that have been established for trials in kidney disease, and outlines strategies for implementing core patient-reported outcomes in trials., (Copyright © 2024 Elsevier Inc. All rights reserved.)

Background: Low physical activity and functional impairment are prevalent and unaddressed in people receiving peritoneal dialysis (PD). Exercise has been shown to improve physical function and mental health for people with kidney disease., Methods: Cross-sectional descriptive survey aimed at identifying the exercise and physical activity perceptions and practice patterns of people receiving PD. The survey was developed and pretested with persons living with kidney disease, PD clinicians and exercise specialists., Results: There were 108 respondents (people receiving PD) with the majority from Canada (68%) and the United Kingdom (25%). Seventy-one per cent were engaged in physical activity two or more times per week. Most (91.8%) believed that physical activity is beneficial, and 61.7% reported healthcare provider discussion about physical activity. Perceptions regarding weightlifting restrictions varied: 76% were told not to lift weight with a maximum amount ranging from 2 kg to 45 kg. Few (28%) were instructed to drain PD fluid prior to physical activity. Mixed advice regarding swimming ability was common (44% were told they could swim and 44% were told they should not)., Conclusions: Knowledge gaps suggest that education for both healthcare providers and patients is needed regarding the practice of exercise for people living with PD. Common areas of confusion include the maximum weight a person should lift, whether exercise was safe with or without intrabdominal PD fluid in situ and whether swimming is allowed. Further research is needed to provide patients with evidence-based recommendations rather than defaulting to restricting activity., Competing Interests: Declaration of conflicting interestsThe author(s) declared the following potential conflicts of interest with respect to the research, authorship, and/or publication of this article: The views expressed are those of the author(s) and not necessarily those of the ISPD.

Objective: To describe how Commonwealth, state and territory policies address access to care for Australians living with chronic kidney disease (CKD) with an emphasis on Aboriginal and Torres Strait Islanders and people residing in rural and remote areas., Methods: We searched government health department websites for current policies up to March 2022 that addressed access to care for people with CKD., Results: We included 98 policies: 28 were Commonwealth, and 70 were state or territory-based. There was wide variation in the policies for people with CKD in number and type across the jurisdictions. Of CKD specific policies, only three policies were specific for people living with CKD in rural and remote areas and no policies were specific for Aboriginal and Torres Strait Islander people., Conclusion: There is a lack of CKD-specific policies addressing access to care for Aboriginal and Torres Strait Islander people and people living in rural and remote communities., Implications for Public Health: Despite the known disparities in the burden of CKD there are few policies addressing CKD disparities for Aboriginal and Torres Strait Islander people and Australians living in rural and remote areas. Policies that specifically address the barriers to accessing care are required to reduce inequities., (Copyright © 2024 The Authors. Published by Elsevier B.V. All rights reserved.)

Objectives: Peritoneal dialysis (PD) allows patients increased autonomy and flexibility; however, both infectious and non-infectious complications may lead to technique failure, which shortens treatment longevity. Maintaining patients on PD remains a major challenge for nephrologists. This study aims to describe nephrologists' perspectives on technique survival in PD., Design: Qualitative semistructured interview study. Transcripts were thematically analysed., Setting and Participants: 30 nephrologists across 11 countries including Australia, the USA, the UK, Hong Kong, Canada, Singapore, Japan, New Zealand, Thailand, Colombia and Uruguay were interviewed from April 2017 to November 2019., Results: We identified four themes: defining patient suitability (confidence in capacity for self-management, ensuring clinical stability and expected resilience), building endurance (facilitating access to practical support, improving mental well-being, optimising quality of care and training to reduce risk of complications), establishing rapport through effective communications (managing expectations to enhance trust, individualising care and harnessing a multidisciplinary approach) and confronting fear and acknowledging barriers to haemodialysis (preventing crash landing to haemodialysis, facing concerns of losing independence and positive framing of haemodialysis)., Conclusion: Nephrologists reported that technique survival in PD is influenced by patients' medical circumstances, psychological motivation and positively influenced by the education and support provided by treating clinicians and families. Strategies to enhance patients' knowledge on PD and communication with patients about technique survival in PD are needed to build trust, set patient expectations of treatment and improve the process of transition off PD., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2024. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Competing Interests: S.C. is supported by the Australian National Health and Medical Research Council Emerging Leadership Scholarship and the Royal Australasian College of Physicians Research Establishment Fellowship. C.H. is the recipient of research grants paid to her institution from Baxter Health and Fresenius Medical Care and from Otsuka, Janssen, and GlaxoSmithKline for trial steering committee activities, paid to her institution. D.J. has received consultancy fees, research grants, speaker’s honoraria, and travel sponsorships from Baxter Health and Fresenius Medical Care. He has received consultancy fees from AstraZeneca, Bayer, and AWAK; speaker’s honoraria from Ono and BI and Lilly; and travel sponsorships from Amgen. He is a current recipient of an Australian National Health and Medical Research Council (NHMRC) Leadership Investigator Grant. A.J. is supported by the NHMRC Research Fellowship. A.V. receives grant support from the Royal Australasian College of Physicians (Jacquot Research Establishment Award) and the Princess Alexandra Research Foundation. D.C.B. receives institutional research grant funding from CareDx and is a consultant for CareDx, Medeor, Sanofi, and Vera Therapeutics and is supported by National Institute of Diabetes and Digestive and Kidney Diseases U01 DK116042, U01AI063594, and R44DK123978. E.B. receives research support from Merck, Takeda and Hologix, and DSMB for Amplyx and is an unpaid consultant for Merck and Takeda. Y.C. has received research grants and speaker’s honoraria from Baxter Health and Fresenius Medical Care and is a current recipient of an Australian NHMRC Emerging Leadership Investigator Grant and Queensland Health Advancing Care Fellowship (mid-career). The other authors declare no conflicts of interest.

Rationale & Objective: Indigenous People suffer a high burden of kidney disease. Those receiving maintenance dialysis have worse outcomes compared with similarly treated non-Indigenous patients. We characterized the experiences of Indigenous patients receiving dialysis in British-colonized countries to gain insights into which aspects of kidney care may benefit from improvement., Study Design: A systematic review of published qualitative interview studies., Setting & Study Populations: Indigenous Peoples aged 18 years and over, receiving hemodialysis or peritoneal dialysis in British-colonized countries., Selection Criteria for Studies: Search terms for Indigenous Peoples, dialysis, and qualitative research were entered into Medline, Embase, PsycINFO, and CINAHL and searched from inception to January 5, 2023., Data Extraction: Characteristics of each study were extracted into Microsoft Excel for quality assessment., Analytical Approach: Data were analyzed using thematic synthesis., Results: The analysis included 28 studies involving 471 participants from Australia, New Zealand, Canada, and the United States. We identified four themes: centrality of family and culture (continuing dialysis for family, gaining autonomy through shared involvement, balancing primary responsibility to care for family); marginalization due to structural and social inequities (falling through gaps in primary care intensifying shock, discriminated against and judged by specialists, alienated and fearful of hospitals, overwhelmed by travel, financial and regimental burdens); vulnerability in accessing health care (need for culturally responsive care, lack of language interpreters, without agency in decision-making, comorbidities compounding complexity of self-management); and distress from separation from community (disenfranchisement and sorrow when away for dialysis, inability to perpetuate cultural continuity, seeking a kidney transplant)., Limitations: We only included articles published in English., Conclusions: Indigenous patients receiving dialysis experience inequities in health care that compound existing accessibility issues caused by colonization. Improving the accessibility and cultural responsiveness of dialysis and kidney transplant services in collaboration with Indigenous stakeholders holds promise to enhance the experience of Indigenous patients receiving dialysis., Plain-Language Summary: Worldwide Indigenous populations suffer a high incidence of chronic disease leading to lower life expectancy, particularly for kidney disease, an insidious condition requiring long-term dialysis treatment. By listening to Indigenous dialysis patients' stories, we hoped to understand how to improve their experience. We gathered 28 qualitative research studies from four countries reporting Indigenous adults' experiences of dialysis. They described lacking awareness of kidney disease, poor access to health services, systemic racism, inadequate cultural safety, and being dislocated from family, community, and culture. These findings indicate that respectful collaboration with Indigenous Peoples to craft and implement policy changes holds promise to improve prevention, integrate culturally responsive health care practices, and provide better access to local dialysis services and opportunities for kidney transplants., (Copyright © 2023 National Kidney Foundation, Inc. Published by Elsevier Inc. All rights reserved.)

Home dialysis offers several clinical and quality-of-life benefits for patients with kidney failure. However, it is important to recognize that home dialysis may place an increased burden on patients and their care partners. Sources of burden may include concerns about the ability to adequately and safely perform dialysis at home, physical symptoms, impairment of life participation, psychosocial challenges, and care partner burnout. Overlooking or failing to address these issues may lead to adverse events that negatively affect health and quality of life and reduce longevity of home dialysis. This study will explore aspects of home dialysis associated with burden, emphasize the need for increased awareness of potential challenges, and elaborate on strategies to overcome sources of burden. Future research should actively involve patients and care partners to better understand their motivation, experiences, and needs to better inform support strategies., (Copyright © 2024 by the American Society of Nephrology.)

Cancer has been identified by kidney transplant recipients as a critically important outcome. The co-occurrence of cancer and kidney transplantation represents a complex intersection of diseases, symptoms, and competing priorities for treatments. Research that focuses on biochemical parameters and clinical events may not capture the priorities of patients. Patient-centered research can improve the relevance and efficiency of research and is particularly pertinent in the setting of cancer and kidney transplantation to facilitate shared decision-making in complex clinical situations. In addition, patient-reported outcomes can facilitate the assessment of patients' experiences, symptom burden, treatment side effects, and quality of life. This review discusses patient-centered research in the context of kidney transplantation and cancer, including consumer involvement in research and patient-centered outcomes and their measures and inclusion in core outcome sets., (Copyright © 2024 Elsevier Inc. All rights reserved.)

Background: Chronic kidney disease (CKD) is an important but insufficiently recognized public health problem. Unprecedented advances in delaying progression of CKD and reducing kidney failure and death have been made in recent years, with the addition of the sodium-glucose cotransporter 2 inhibitors and other newer medication to the established standard of care with inhibitors of the renin-angiotensin system. Despite knowledge of these effective therapies, their prescription and use remain suboptimal globally, and more specially in low resource settings. Many challenges contribute to this gap between knowledge and translation into clinical care, which is even wider in lower resource settings across the globe. Implementation of guideline-directed care is hampered by lack of disease awareness, late or missed diagnosis, clinical inertia, poor quality care, cost of therapy, systemic biases, and lack of patient empowerment. All of these are exacerbated by the social determinants of health and global inequities., Summary: CKD is a highly manageable condition but requires equitable and sustainable access to quality care supported by health policies, health financing, patient and health care worker education, and affordability of medications and diagnostics., Key Messages: The gap between the knowledge and tools to treat CKD and the implementation of optimal quality kidney care should no longer be tolerated. Advocacy, research and action are required to improve equitable access to sustainable quality care for CKD everywhere., (© 2023 The Author(s). Published by S. Karger AG, Basel.)

Kidney transplantation offers recipients superior outcomes and improved quality of life compared with dialysis. However, the need for ongoing immunosuppression places recipients at increased risk of certain forms of cancer. Screening and early detection of precancerous lesions are one of the few proven ways to lower the risk of cancer morbidity and mortality in the transplant population. Women have additional barriers to cancer screening services globally, especially in low- and middle-income countries as well as within certain disadvantaged groups in high-income countries. There is a dearth of published data on screening guidelines and policies on post-transplant malignancy in female recipients. It is vital that health care providers and patients are educated regarding the risks of cancer at all post-transplant stages and that the recommended screening policies are adhered to in order to reduce associated morbidity and mortality in this at-risk group., (Copyright © 2024. Published by Elsevier Inc.)

Aims: Blood glucose control is central to the management of diabetes, and continuous glucose monitoring (CGM) improves glycemic control. We aimed to describe the perspectives of people with diabetes using CGM., Materials and Methods: We performed a systematic review of qualitative studies., Results: Fifty-four studies involving 1845 participants were included. Six themes were identified: gaining control and convenience (reducing pain and time, safeguarding against complications, achieving stricter glucose levels, and sharing responsibility with family); motivating self-management (fostering ownership, and increasing awareness of glycemic control); providing reassurance and freedom (attaining peace of mind, and restoring social participation); developing confidence (encouraged by the endorsement of others, gaining operational skills, customizing settings for ease of use, and trust in the device); burdened with device complexities (bewildered by unfamiliar technology, reluctant to rely on algorithms, overwhelmed by data, frustrated with malfunctioning and inaccuracy, distressed by alerts, and bulkiness of machines interfering with lifestyle); and excluded by barriers to access (constrained by cost, lack of suppliers)., Conclusions: CGM can improve self-management and confidence in patients managing diabetes. However, the technical issues, uncertainty in readings, and cost may limit the uptake. Education and training from the health professionals may help to reduce the practical and psychological burden for better patient outcomes., (© 2023 The Authors. Journal of Diabetes published by Ruijin Hospital, Shanghai Jiaotong University School of Medicine and John Wiley & Sons Australia, Ltd.)

Introduction: Life participation has been established as a critically important core for trials in kidney transplantation. We aimed to validate a patient-reported outcome measure for life participation in kidney transplant recipients., Methods: A psychometric evaluation of the Standardized Outcomes in Nephrology life participation (SONG-LP) measure was conducted in adult kidney transplant recipients. The measure includes 4 items of life participation (leisure, family, work, and social) each with a 5-point Likert scale. Each item is scored from 0 (never) to 4 (always) and the summary measure score the average of each item., Results: A total of 249 adult kidney transplant recipients from 20 countries participated. The SONG-LP instrument demonstrated internal consistency (Cronbach's α = 0.87; 95% confidence intervals [CI]: 0.83-0.90, baseline) and test-retest reliability over 1 week (intraclass correlation coefficient of 0.62; 95% CI: 0.54-0.70). There was moderate to high correlation (0.65; 95% CI: 0.57-0.72) with the PROMIS Ability to Participate in Social Roles and Activities Short Form 8a that assessed a similar construct, and moderate correlation with measures that assessed related concepts (i.e., EQ5D 0.57; 95% CI: 0.49-0.65), PROMIS Cognitive Functional Abilities Subset Short Form 4a (0.40; 95% CI: 0.29-0.50)., Conclusion: The SONG-LP instrument is a simple, internally consistent, reliable measure for kidney transplant recipients and correlates with similar measures. Routine incorporation in clinical trials will ensure consistent and appropriate assessment of life participation for informed patient-centered decision-making., (© 2023 International Society of Nephrology. Published by Elsevier Inc.)

Health inequity refers to the existence of unnecessary and unfair differences in the ability of an individual or community to achieve optimal health and access appropriate care. Kidney diseases, including acute kidney injury and chronic kidney disease, are the epitome of health inequity. Kidney disease risk and outcomes are strongly associated with inequities that occur across the entire clinical course of disease. Insufficient investment across the spectrum of kidney health and kidney care is a fundamental source of inequity. In addition, social and structural inequities, including inequities in access to primary health care, education and preventative strategies, are major risk factors for, and contribute to, poorer outcomes for individuals living with kidney diseases. Access to affordable kidney care is also highly inequitable, resulting in financial hardship and catastrophic health expenditure for the most vulnerable. Solutions to these injustices require leadership and political will. The nephrology community has an important role in advocacy and in identifying and implementing solutions to dismantle inequities that affect kidney health., (© 2023. Springer Nature Limited.)

Background: Gender disparities in access to kidney transplantation are apparent, with women being up to 20% less likely to receive kidney transplant compared with men across different settings and socioeconomic backgrounds. We aimed to describe nephrologists' perspectives on gender disparities in access to kidney transplantation., Methods: Fifty-one nephrologists (55% women) from 22 countries participated in semistructured interviews from October 2019 to April 2020. We analyzed the transcripts thematically., Results: We identified three themes: caregiving as a core role (coordinators of care for partners, fulfilling family duties over own health, maternal protectiveness, and inherent willingness and generosity), stereotyping and stigma (authority held by men in decision making, protecting the breadwinner, preserving body image and appearance, and safeguard fertility), social disadvantage and vulnerability (limited information and awareness, coping alone and lack of support, disempowered by language barriers, lack of financial resources, and without access to transport)., Conclusions: Gender disparities in access to kidney transplantation are perceived by nephrologists to be exacerbated by gender norms and values, stigma and prejudice, and educational and financial disadvantages that are largely encountered by women compared with men across different socioeconomic settings., (Copyright © 2023 by the American Society of Nephrology.)

Rationale & Objective: COVID-19 disproportionately affects people with comorbidities, including chronic kidney disease (CKD). We describe the impact of COVID-19 on people with CKD and their caregivers., Study Design: A systematic review of qualitative studies., Setting & Study Populations: Primary studies that reported the experiences and perspectives of adults with CKD and/or caregivers were eligible., Search Strategy & Sources: MEDLINE, Embase, PsycINFO, CINAHL searched from database inception to October 2022., Data Extraction: Two authors independently screened the search results. Full texts of potentially relevant studies were assessed for eligibility. Any discrepancies were resolved by discussion with another author., Analytical Approach: A thematic synthesis was used to analyze the data., Results: Thirty-four studies involving 1,962 participants were included. Four themes were identified: exacerbating vulnerability and distress (looming threat of COVID-19 infection, intensifying isolation, aggravating pressure on families); uncertainty in accessing health care (overwhelmed by disruption of care, confused by lack of reliable information, challenged by adapting to telehealth, skeptical about vaccine efficacy and safety); coping with self-management (waning fitness due to decreasing physical activity, diminishing ability to manage diet, difficulty managing fluid restrictions, minimized burden with telehealth, motivating confidence and autonomy); and strengthening sense of safety and support (protection from lockdown restrictions, increasing trust in care, strengthened family connection)., Limitations: Non-English studies were excluded, and inability to delineate themes based on stage of kidney and treatment modality., Conclusions: Uncertainty in accessing health care during the COVID-19 pandemic exacerbated vulnerability, emotional distress, and burden, and led to reduced capacity to self-manage among patients with CKD and their caregivers. Optimizing telehealth and access to educational and psychosocial support may improve self-management and the quality and effectiveness of care during a pandemic, mitigating potentially catastrophic consequences for people with CKD., Plain-Language Summary: During the COVID-19 pandemic, patients with chronic kidney disease (CKD) faced barriers and challenges to accessing care and were at an increased risk of worsened health outcomes. To understand the perspectives about the impact of COVID-19 among patients with CKD and their caregivers, we conducted a systematic review of 34 studies involving 1,962 participants. Our findings demonstrated that uncertainty in accessing care during the COVID-19 pandemic exacerbated the vulnerability, distress, and burden of patients and impaired their abilities for self-management. Optimizing the use of telehealth and providing education and psychosocial services may mitigate the potential consequences for people with CKD during a pandemic., (Copyright © 2023 National Kidney Foundation, Inc. Published by Elsevier Inc. All rights reserved.)

Patient and caregiver involvement broadens the scope of new knowledge generated from research and can enhance the relevance, quality and impact of research on clinical practice and health outcomes. Incorporating the perspectives of people with lived experience of chronic kidney disease (CKD) affords new insights into the design of interventions, study methodology, data analysis and implementation and has value for patients, healthcare professionals and researchers alike. However, patient involvement in CKD research has been limited and data on which to inform best practice is scarce. A number of frameworks have been developed for involving patients and caregivers in research in CKD and in health research more broadly. These frameworks provide an overall conceptual structure to guide the planning and implementation of research partnerships and describe values that are essential and strategies considered best practice when working with diverse stakeholder groups. This article aims to provide a summary of the strategies most widely used to support multistakeholder partnerships, the different ways patients and caregivers can be involved in research and the methods used to amalgamate diverse and at times conflicting points of view., Competing Interests: The authors have no conflicts of interest to declare., (© The Author(s) 2023. Published by Oxford University Press on behalf of the ERA.)

Although solid organ transplantation improves survival and quality of life in many patients with organ failure, treatment complications and side effects can have debilitating consequences for patients. Patient-reported outcome measures (PROMs) capture how patients feel and function, including quality of life, symptoms, and side effects that are assessed directly by patients. Yet, they remain infrequently reported in trials in solid organ transplantation. Barriers to implementing PROMs in trials include uncertainty in selecting appropriate PROMs, concerns about resources limitations, patient burden, and limited evidence to support the psychometric robustness of measures for use in transplant recipients. In recent years, there have been increasing efforts to include patient-reported outcomes that are important to patients in trials to ensure that trials provide patient-centered information for decision-making. This article will provide an overview of PROMs, discuss PROs that are important to solid organ transplant recipients and those that are used in trials in solid organ transplantation, and outline approaches for selecting PROMs for clinical trials., Competing Interests: The authors declare no funding or conflicts of interest., (Copyright © 2023 Wolters Kluwer Health, Inc. All rights reserved.)

Introduction: Gastrointestinal (GI) symptoms in kidney transplant are common and debilitating. We aimed to ascertain patients' preferences for GI symptom management options to help future interventions align with treatment priorities., Methods: A discrete choice experiment was conducted with kidney transplant recipients in 3 Australian nephrology units. A multinomial logit model was used to quantify the preferences and trade-offs between 5 characteristics: cost, formulation, symptom burden, dietary changes, and medication quantities., Results: Seventy patients participated (mean age ± SD: 47 ± 15 years, 56% female), 57% had GI symptoms. Patients preferred interventions that will achieve complete resolution of GI symptoms compared to no improvement (odds ratio [95% confidence interval]: 15.3 [1.80, 129.50]), were delivered as a tablet rather than a sachet (1.6 [1.27, 2.08]), retained their current diet compared to eliminating food groups (6.0 [2.19, 16.27]), reduced medication burden (1.4 [1.06, 1.79]), and had lower costs (0.98 [0.96, 1.00]). Participants would be willing to pay AUD$142.20 [$83.90, $200.40] monthly to achieve complete resolution of GI symptoms or AUD$100.90 [$9.60, $192.10] to have moderate improvement in symptoms., Conclusions: Interventions that are highly effective in relieving all GI symptoms without the need for substantive dietary changes, and in tablet form, are most preferred by kidney transplant recipients., (© 2023 International Society of Nephrology. Published by Elsevier Inc.)

Aim: Chronic kidney disease (CKD) and its treatment places a financial burden on healthcare systems and households worldwide, yet little is known of its financial impact, on those who reside in rural settings. We aimed to quantify the financial impacts and out-of-pocket expenditure experienced by adult rural patients with CKD in Australia., Methods: A web based structured survey was completed between November 2020 and January 2021. English speaking participants over 18 years of age, diagnosed with CKD stages 3-5, those receiving dialysis or with a kidney transplant, who lived in a rural location in Australia., Results: In total 77 (69% completion rate) participated. The mean out of pocket expenses were 5056 AUD annually (excluding private health insurance costs), 78% of households experienced financial hardship with 54% classified as experiencing financial catastrophe (out-of-pocket expenditure greater than 10% of household income). Mean distances to access health services for all rural and remote classifications was greater than 50 kilometres for specialist nephrology services and greater than 300 kilometres for transplanting centres. Relocation for a period greater than 3 months to access care was experienced by 24% of participants., Conclusion: Rural households experience considerable financial hardship due to out-of-pocket costs in accessing treatment for CKD and other health-related care, raising concerns about equity in Australia, a high-income country with universal healthcare., (© 2023 The Authors. Nephrology published by John Wiley & Sons Australia, Ltd on behalf of Asian Pacific Society of Nephrology.)

Background: Self-monitoring of blood pressure is a key strategy in managing hypertension but may be challenging and burdensome for patients. The aim of the study was to describe the perspectives and experiences of self-monitoring of blood pressure in patients with hypertension., Methods: MEDLINE, Embase, PsycINFO, and CINAHL were searched from database inception to March 2022. We used thematic synthesis to analyze the data., Results: Thirty-five studies involving 872 patients aged 18-95 years were included. Four themes were identified: enabling autonomy and empowerment of own health (allowing access to comprehensive and accurate data, bolstering motivation for lifestyle changes, encouraging diligence in medication taking, gaining interest in self-management, and increasing awareness of health status); providing reassurance and convenience (instilling a sense of security, readiness for troubleshooting, and reducing the frequency of clinical appointments); triggering confusion and stress (anxiety and panic over "bad" numbers, constant reminder of illness identity, disregarded by clinicians, lack of confidence in interpreting and responding to results, redundancy of continuous monitoring, and uncertainties around targets and frequency of measures, concerns of unreliability); financial and operational burden of device (vulnerability preventing use, or unsustainable cost)., Conclusions: Inadequate knowledge about the benefits of lowering blood pressure, home blood pressure monitoring, blood pressure goals, and interpretation of blood pressure values, limited access to home blood pressure monitoring devices, and psychological burden with home blood pressure monitoring limit home blood pressure monitoring., (© The Author(s) 2023. Published by Oxford University Press on behalf of American Journal of Hypertension, Ltd.)

Cardiovascular disease is the leading cause of death in patients receiving hemodialysis. Currently, there is no standardized definition of myocardial infarction (MI) for patients receiving hemodialysis. Through an international consensus process MI was established as the core CVD measure for this population in clinical trials. The Standardised Outcomes in Nephrology Group-Hemodialysis (SONG-HD) initiative convened a multidisciplinary, international working group to address the definition of MI in this population. On the basis of current evidence, the working group recommends using the Fourth Universal Definition of Myocardial Infarction with specific caveats with regard to the interpretation of "ischemic symptoms" and performing a baseline 12-lead electrocardiogram to facilitate interpretation of acute changes on subsequent tracings. The working group does not recommend obtaining baseline cardiac troponin values, though does recommend obtaining serial cardiac biomarkers in settings where ischemia is suspected. The application of an evidence-based uniform definition should increase the reliability and accuracy of trial results., (Copyright © 2023 International Society of Nephrology. All rights reserved.)

Background: An increasing number of older people are living with chronic kidney disease (CKD). Many have complex healthcare needs and are at risk of deteriorating health and functional status, which can adversely affect their quality of life. Comprehensive geriatric assessment (CGA) is an effective intervention to improve survival and independence of older people, but its clinical utility and cost-effectiveness in frail older people living with CKD is unknown., Methods: The GOAL Trial is a pragmatic, multi-centre, open-label, superiority, cluster randomised controlled trial developed by consumers, clinicians, and researchers. It has a two-arm design, CGA compared with standard care, with 1:1 allocation of a total of 16 clusters. Within each cluster, study participants ≥ 65 years of age (or ≥ 55 years if Aboriginal or Torres Strait Islander (First Nations Australians)) with CKD stage 3-5/5D who are frail, measured by a Frailty Index (FI) of > 0.25, are recruited. Participants in intervention clusters receive a CGA by a geriatrician to identify medical, social, and functional needs, optimise medication prescribing, and arrange multidisciplinary referral if required. Those in standard care clusters receive usual care. The primary outcome is attainment of self-identified goals assessed by standardised Goal Attainment Scaling (GAS) at 3 months. Secondary outcomes include GAS at 6 and 12 months, quality of life (EQ-5D-5L), frailty (Frailty Index - Short Form), transfer to residential aged care facilities, cost-effectiveness, and safety (cause-specific hospitalisations, mortality). A process evaluation will be conducted in parallel with the trial including whether the intervention was delivered as intended, any issue or local barriers to intervention delivery, and perceptions of the intervention by participants. The trial has 90% power to detect a clinically meaningful mean difference in GAS of 10 units., Discussion: This trial addresses patient-prioritised outcomes. It will be conducted, disseminated and implemented by clinicians and researchers in partnership with consumers. If CGA is found to have clinical and cost-effectiveness for frail older people with CKD, the intervention framework could be embedded into routine clinical practice. The implementation of the trial's findings will be supported by presentations at conferences and forums with clinicians and consumers at specifically convened workshops, to enable rapid adoption into practice and policy for both nephrology and geriatric disciplines. It has potential to materially advance patient-centred care and improve clinical and patient-reported outcomes (including quality of life) for frail older people living with CKD., Trial Registration: ClinicalTrials.gov NCT04538157. Registered on 3 September 2020., (© 2023. The Author(s).)

Introduction: Low activity levels and poor physical function are associated with technique failure and mortality in people receiving peritoneal dialysis (PD). Adequate levels of physical function are required to maintain independence for people choosing this predominantly home-based therapy. The objective of this study was to identify the exercise-related perceptions and practices of PD clinicians globally., Methods: We conducted a cross-sectional survey of PD clinicians from English-, Thai-, Spanish-, and Portuguese-speaking PD-prevalent countries exploring clinicians' perceptions and practices of swimming, activity following PD catheter insertion, lifting, and falls prevention. This study was convened by the International Society of Peritoneal Dialysis and Global Renal Exercise Network between July and December 2021., Results: Of 100 of the highest PD-prevalent countries, 85 responded and were represented in the findings. A total of 1125 PD clinicians (448 nephrologists, 558 nephrology nurses, 59 dietitians, and 56 others) responded from 61% high-income, 32% upper middle-income and 7% lower middle-income countries. The majority ( n  = 1054, 94%) agreed that structured exercise programs would be beneficial for people receiving PD. Most respondents believed people on PD could perform more exercise ( n  = 907, 81%) and that abdominal strengthening exercises could be safely performed ( n  = 661, 59%). Compared to clinicians in high-income countries, clinicians from lower middle-income status (odds ratio [OR], 5.57; 1.64 to 18.9) are more likely to promote participation in physical activity., Conclusion: Clinicians know the importance of physical activity in people receiving PD. Exercise counseling and structured exercise plans could be included in the standard care of people receiving PD to maintain independence., (© 2023 International Society of Nephrology. Published by Elsevier Inc.)

Nutrition is an integral component in the management of chronic kidney disease (CKD), and kidney health professionals play a crucial role in educating patients on dietary interventions for CKD. Several dietary modifications are indicated for CKD that require frequent adaptations with CKD progression and with underlying metabolic disturbances. However, poor adherence to dietary interventions is not uncommon among patients with CKD. An effective education program on nutrition intervention consists of providing knowledge and developing skills that are necessary to support behavioral change. The application of theoretical models of behavioral change such as social cognitive theory and the transtheoretical model in nutrition intervention has been reported to be effective in promoting changes in dietary habits. This review summarizes the evidence supporting the application of theoretical models as strategies to enhance nutrition education for patients with CKD. In addition, digital technologies are gaining interest in empowering patients and facilitating nutrition management in patients with CKD. This review also examines the applications of the latest digital technologies guided by behavioral theory in facilitating patients' changes in dietary intake patterns and lifestyle habits., (Copyright © 2023 Elsevier Inc. All rights reserved.)

Introduction: Most patients with kidney failure commence and continue hemodialysis (HD) thrice weekly. Incremental initiation (defined as HD less than thrice weekly) is increasingly considered to be safe and less burdensome, but little is known about patients' perspectives. We aimed to describe patients' priorities and concerns regarding incremental HD., Methods: Patients currently, previously, or soon to be receiving HD in Australia participated in two 90-minute online workshops to discuss views about HD focusing on incremental start and priorities for trial outcomes. Transcripts were analyzed using thematic analysis. Outcomes were ranked on the basis of the sum of participants' priority scores (i.e., single allocation of 3 points for most important, 2 for second, and 1 for third most important outcome)., Results: All 26 participants (1 caregiver and 25 patients) preferred an incremental HD approach. The top prioritized outcomes were quality of life (QOL) (56 points), residual kidney function (RKF) (27 points), and mortality (16 points). The following 4 themes underpinning outcome priorities, experience, and safety concerns were identified: (i) unpreparedness and pressure to adapt, (ii) disruption to daily living, (iii) threats to safety, and (iv) hope and future planning., Conclusion: Patients with kidney failure preferred an incremental start to HD to minimize disruption to daily living and reduce the negative impacts on their education, ability to work, and family life. QOL was the most critically important outcome, followed by RKF and survival., (© 2022 Published by Elsevier Inc. on behalf of the International Society of Nephrology.)

Rationale & Objective: Caregivers of patients with chronic kidney disease from rural communities play a crucial role in access to dialysis and transplantation, but they face many challenges including geographical distance, financial hardship, and limited support. This study aimed to inform strategies to overcome these challenges by describing the experiences of caregivers of patients with kidney failure from rural Australian communities in accessing kidney replacement therapy., Study Design: Qualitative study., Setting & Participants: 18 adult caregivers of Australian rural patients with kidney failure treated with dialysis or kidney transplantation., Analytical Approach: Semistructured interviews were conducted. Interview transcripts were thematically analyzed., Results: The 18 participants were aged 20 to 78 years; 13 (72%) were female, and 13 (72%) were the spouse/partner of the patient. We identified 5 themes: devastating social isolation (difficult periods of separation, exclusion from peers, forced relocation); financial dependency and sacrifice (burgeoning out-of-pocket costs, disruption to work life, foregoing autonomy); ongoing psychological trauma (concern for neglect and stress on children, long-term emotional distress); overwhelmed by multifaceted roles and expectations (patient advocacy, uncertainty in navigating multiple health systems); and persistent burden of responsibility (loss of self-identity, ongoing travel requirements, scarcity of psychosocial support, unpreparedness for treatment regime)., Limitations: The study was conducted in a high-income, English-speaking country with universal health insurance, which may limit the transferability of the findings., Conclusions: Australian rural caregivers of people with kidney failure treated by maintenance dialysis or transplantation experience an exhausting physical, financial, and psychological burden. Strategies to address these profound challenges are needed., Plain-Language Summary: This interview-based study elicited the challenges faced by people and family members who care for patients from rural towns who are receiving dialysis or kidney transplantation. The barriers and difficulties reported included traveling long distances, needing to move to larger towns and leaving their homes, feeling concerned for the long-term effects on their children, physical exhaustion, and financial issues. Additional efforts are needed to identify the means by which caregivers and their families in rural towns can obtain support to care for those with kidney failure., (Copyright © 2022 National Kidney Foundation, Inc. Published by Elsevier Inc. All rights reserved.)