Search

Chronic health conditions often affect the lives of family members as well as the patient themselves. The current study aimed to explore the experiences of partners of individuals with diabetes and chronic kidney disease (CKD) who received a simultaneous pancreas and kidney transplant (SPKT) to understand the wider impact of SPKTs. Eight partners of recipients of SPKT were interviewed about their experiences before and after the transplant. Interviews were transcribed verbatim and analysed thematically. Participants described how they navigated life with an unwell partner; sub-themes included a) living with pervasive worry, b) the challenge of enhanced responsibilities, and c) the buffering effect of social support. Diabetes complications, such as the experience of severe hypoglycaemia, particularly fuelled worry. Participants felt great relief after their partner's successful transplant but also faced certain realities around the potential for their partner's health to deteriorate again. The study highlights the impact of diabetes and CKD on patients' families and the wider benefit of transplantation, not just for the patient. The pancreas transplant, in addition to the kidney, relieved partners of their worry about hypoglycaemic events and the development of diabetes complications. Partners may benefit from being encouraged to seek support and to maintain their own health and wellbeing., Competing Interests: The authors have declared that no competing interests exist., (Copyright: © 2024 Hann et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.)

Background: The relationship between chronic kidney disease-mineral and bone disorder (CKD-MBD) and cognitive function remains largely unknown. This cross-sectional study aimed to explore the association between CKD-MBD and cognitive function in patients on hemodialysis., Methods: Hemodialysis patients aged ≥ 65 years without diagnosed dementia were included. Cognitive function was assessed using the Montreal Cognitive Assessment (MoCA) and Mini-Mental State Examination (MMSE). CKD-MBD markers, serum magnesium, intact parathyroid hormone (PTH), 25-hydroxyvitamin D (25-OHD), fibroblast growth factor (FGF)-23, and soluble α-klotho were measured., Results: Overall, 390 patients with a median age of 74 (interquartile range, 70-80) years, mean serum magnesium level of 2.4 ± 0.3 mg/dL, and median MoCA and MMSE scores of 25 (22-26) and 28 (26-29), respectively, were analyzed. MoCA and MMSE scores were significantly higher (preserved cognitive function) in the high-magnesium group than in the low-magnesium group according to the unadjusted linear regression analysis (β coefficient [95% confidence interval (CI)] 1.05 [0.19, 1.92], P = 0.017 for MoCA; 1.2 [0.46, 1.94], P = 0.002 for MMSE) and adjusted multivariate analysis with risk factors for dementia (β coefficient [95% CI] 1.12 [0.22, 2.02], P = 0.015 for MoCA; 0.92 [0.19, 1.65], P = 0.014 for MMSE)., Conclusions: Higher serum magnesium levels might be associated with preserved cognitive function in hemodialysis patients. Conversely, significant associations were not observed between cognitive function and intact PTH, 25-OHD, FGF-23, or soluble α-klotho levels., Competing Interests: Declarations Conflicts of interest The authors have declared that no conflict of interest exists. Ethical approval All procedures were performed in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki Declaration and its later amendments or comparable ethical standards. The institutional review board of our hospital (Approval No.: 33–183(10800)) approved the study. Informed consent Informed consent was obtained from all individual participants included in the study., (© 2024. The Author(s), under exclusive licence to Japanese Society of Nephrology.)

Purpose of Review: The risk of cognitive impairment is higher in people with CKD than in the general population. The complex relationship between CKD and cognitive dysfunction has not been extensively characterized. Here, we review epidemiological associations, specific patterns of CKD-related cognitive impairment, the underlying mechanisms, and recently published data on relevant biomarkers., Recent Findings: Despite some discrepancies, recent published studies have confirmed that CKD is associated with cognitive function (e.g. incident cognitive events). Although patients with CKD often exhibit impairments in executive functions and attention, it is noteworthy that other cognitive functions (e.g. memory) can be preserved. The key mechanisms described recently include vascular damage, genetic factors, the accumulation of uremic toxins, disruption of the blood-brain barrier, glymphatic system dysfunction, and changes in the gut-brain axis. Kidney function is increasingly seen as a game changer in the interpretation of biomarkers of cognitive impairment and, especially, hallmarks of Alzheimer disease., Summary: The data reviewed here highlight the need for interdisciplinary collaboration between nephrologists and neurologists in the care of patients with CKD at risk of cognitive impairment. In order to further improving diagnosis and therapy, future research must elucidate the mechanisms underlying the CKD-cognitive impairment association and confirm the value of biomarkers., (Copyright © 2024 Wolters Kluwer Health, Inc. All rights reserved.)

Background: Chronic kidney disease (CKD) is a prevalent health issue that can have detrimental effects on the quality of life (QoL) of children. Nevertheless, with adequate management and support, many children with CKD can have satisfying lives. The study aimed to investigate the effect of muscle stretching and isometric exercises on QoL of children undergoing hemodialysis., Methods: Sixty-eight children aged 6-18 years with kidney failure undergoing hemodialysis at Assiut University Children Hospital were included. They were randomly assigned to two groups. The study group received a 40-min exercise program three times per week for 2 months, while the control group received routine hospital care. For outcome measures, two tools were used: a simple questionnaire sheet for personal and medical data and PedsQL™ scale., Results: After 2 months of exercise, it was shown that most children in the study group (66.7%) had good QoL, in contrast to only 3.3% in the control group, with a highly statistically significant variation between the two examined groups pertaining to the health-related QoL scale (P value = 0.001) after exercise., Conclusion: The intensity of care for children on hemodialysis has a distinguished impact upon their quality of life. The implementation of muscle stretching and isometric exercises during hemodialysis represents an important aspect of such care that may be associated with significant improvement in all domains of QoL. Children undergoing hemodialysis need well-organized programs that cover all physical and psychological aspects with smart time manipulation and increased attention from their staff., (© 2024. The Author(s).)

Purpose of Review: With ageing populations and rising prevalence of key risk factors, the prevalence of many long-term conditions including chronic kidney disease (CKD) is increasing globally. Health-related quality of life (HRQoL) is important to people living with CKD but not all HRQoL determinants are modifiable. This review summarizes recently identified potentially modifiable factors affecting HRQoL for people with CKD and recent trials incorporating HRQoL as an outcome., Recent Findings: Considering a broad definition of 'potentially modifiable', many factors have been associated with HRQoL in recent observational studies. These include mental health conditions, symptoms, medications, health behaviours, weight-related issues, poor social support, lower education, limited literacy and directly CKD- related factors such as anaemia. Some potentially modifiable factors have been tested in CKD trials, though often with HRQoL as a secondary outcome, so may be underpowered for HRQoL. Interventions with evidence of effect on HRQoL include physical activity, education, some nutritional interventions and medications targeting CKD-related anaemia., Summary: Clinicians should consider the range of potentially modifiable factors influencing HRQoL as part of a holistic approach to CKD care. High-quality, adequately-powered trials, with HRQoL as a primary outcome, with interventions focusing on the other potentially modifiable factors identified are needed., (Copyright © 2024 The Author(s). Published by Wolters Kluwer Health, Inc.)

In the CONVINCE trial, the primary analysis demonstrated a survival benefit for patients receiving high-dose hemodiafiltration (HDF) as compared with high-flux hemodialysis (HD). A secondary objective was to evaluate effects on health-related quality of life (HRQoL); assessed in eight domains (physical function, cognitive function, fatigue, sleep disturbance, anxiety, depression, pain interference, social participation) applying instruments from the Patient-Reported Outcome Measurement Information System (PROMIS) before randomization and every three months thereafter. In total 1360 adults with dialysis-dependent chronic kidney disease, eligible to receive high-flux HDF (23 liters or more), were randomized (1:1); 84% response rate to all questionnaires. Both groups reported a continuous deterioration in all HRQoL domains. Overall, raw score changes from baseline were more favorable in the HDF group, resulting in a significant omnibus test after a median observation period of 30 months. Most relevant single raw score differences were reported for cognitive function. Patients receiving HDF reported a decline of -0.95 units (95% confidence interval - 2.23 to +0.34) whereas HD treated patients declined by -3.90 units (-5.28 to - 2.52). A joint model, adjusted for mortality differences, utilizing all quarterly assessments, identified a significantly slower HRQoL decline in physical function, cognitive function, pain interference, and social participation for the HDF group. Their physical health summary score declined -0.46 units/year slower compared to the HD group. Thus, the CONVINCE trial showed a beneficial effect of high-dose hemodiafiltration for survival as well as a moderate positive effect on patients' quality of life, most pronounced with respect to their cognitive function. REGISTRATION: NTR7138 on the International Clinical Trials Registry Platform., (Copyright © 2024 International Society of Nephrology. Published by Elsevier Inc. All rights reserved.)

Rationale & Objective: End-stage kidney disease (ESKD) negatively affects patients' physical, emotional, and social functioning. Furthermore, adjustment to dialysis require substantial lifestyle changes that may further impact on patients physical and emotional well-being. However, the relationship between Health-Related Quality of life impairment with future adverse outcomes in dialysis is not well characterized. Our study aims to investigate the relationship between Health-Related Quality of Life (HRQoL) and patients' survival and hospitalization rates within a large European dialysis network., Methods: A historical cohort study was conducted to evaluate association of HRQoL with hospitalization and mortality rates over a 12-month follow-up period. Patients responded to a self-administered survey as part of a Continuous Quality Improvement Program implemented in clinics affiliated with the Spanish FMC-Nephrocare organization. Health-Related Quality of Life (HRQoL) was measured with the KDQOL-36. Potential confounders included socio-demographic characteristics, comorbidities, biochemical parameters, dialysis treatment. We used Cox's Proportional Hazard regression to assess the hazard of death and Logistic Regression to assess the likelihood of hospital admissions during 12-month follow-up period., Results: A total of 2280 (51.5%) completed the self-administrated survey, and 1838 patients met the inclusion/exclusion criteria of the study. Higher HRQoL scores were associated with significantly lower mortality and hospitalization risk. Risk estimates were robust to adjustment for potential confounders., Conclusions: Several dimensions of HRQoL are associated with patient-centered outcomes (i.e., mortality and hospitalizations at 1 year). Patient-Reported Outcomes contribute unique pieces of information characterizing patients' health. Residual confounding cannot be fully ruled out; moreover, the high attrition rate could result in selection bias, which may limit the generalizability of the findings to a broader population., (© 2024. The Author(s).)

Background: Psychological distress can be exacerbated by micro (personal) and macro (societal) worries, especially during challenging times. Exploration of this relationship in people with chronic kidney disease is limited., Objectives: (1) To identify the types and levels of worries concerning people with chronic kidney disease in the context of the COVID-19 pandemic; (2) to explore the association of worries with psychological distress including depression, stress, anxiety, and health anxiety., Design and Participants: A cross-sectional online survey collected data at two time points (Autumn 2020, n = 528; Spring 2021, n = 241). Participants included kidney transplant recipients and people with non-dialysis dependent chronic kidney disease., Measurements: The survey included questions about worry taken from the World Health Organisation COVID-19 Survey, the Depression, Anxiety and Stress Scale, and the Short Health Anxiety Index. Data were analysed using descriptive statistics and multiple regression., Results: Worries about loved ones' health, the healthcare system becoming overloaded, losing a loved one, economic recession, and physical health were the highest rated concerns. Worrying about mental health was associated with higher depression, stress, anxiety, and health anxiety. Worrying about physical health was associated with anxiety and health anxiety. Worrying about losing a loved one was associated with health anxiety, and worrying about not being able to pay bills was associated with stress., Conclusions: People with kidney disease reported micro and macro worries associated with psychological distress during the COVID-19 pandemic. This study highlights factors that should be considered to improve the mental health and well-being of people with kidney disease., Competing Interests: The authors have declared that no competing interests exist., (Copyright: © 2024 Ford et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.)

Background: Since chronic kidney disease is highly insidious in the early stages, most diagnosed patients have already developed irreversible renal failure. There is a lack of effective implementation and standardization of health education management for patients with chronic kidney disease, and the impact of health education management on health information literacy is not yet known., Methods: This randomized controlled clinical trial was conducted from March 2022 to March 2023. A total of 130 patients with chronic kidney disease stage 3-4 were selected from a tertiary hospital in Zhuhai via a convenience sampling method and were then randomly assigned to intervention and control groups. The Health Information Literacy Questionnaire for Chronic Kidney Disease was used to assess the health literacy of the patients at month 0 and month 12. In addition, the renal function-related indices of the patients were measured before and after the intervention. The study adhered to SPIRIT guidelines., Results: There was no significant difference between the two groups in health information literacy, platelet count, estimated glomerular filtration rate, or albumin level. However, the intervention group showed a significant improvement in health behavioral status such as information acquisition, checkups, and physical activity. Subgroup analysis revealed that hemoglobin was significantly higher in non-employed patients than in the intervention group. There was a significant improvement in hemoglobin level after receiving health guidance in patients with intermediate education, and acquisition capacity and estimated glomerular filtration rate in the intervention group were lower than in the control group for patients with elementary education., Conclusion: Receiving health coaching helped to improve self-management behaviors and hemoglobin levels of patients with stage 3-4 chronic kidney disease. Education level is an important factor influencing the effectiveness of health coaching techniques., Trial Registration: This study was prospectively registered in the China Clinical Trial Registry on November 10, 2021, with registration number: ChiCTR2100053103., (© 2024. The Author(s).)

Background: In chronic kidney disease (CKD), the durability of patient adherence to fluid and dietary restrictions may depend on the degree to which they have hope that they will enjoy life. Previous cross-sectional studies have shown that higher hope was associated with lower distress from fluid and dietary restrictions and better adherence in the short term. In this study, we aimed to examine the long-term relationship of hope with distress from fluid and dietary restrictions., Methods: This prospective observational cohort study included 444 patients with CKD undergoing dialysis in one of five Japanese nephrology centers. Hope as a predictor was measured using an 18-item health-related hope scale. Outcomes were two-item measures of distress from fluid and dietary intake restrictions using the Japanese version of the Kidney Disease Quality of Life Short Form, Version 1.3 (higher scores indicate lower levels of distress). Multivariate linear mixed models were used to estimate the association of baseline health-related hope with distress from fluid and dietary restrictions at baseline and follow-up., Results: The mean age of the participants was 67 years, and 31.1% of them were females. In total, 124, 98, and 222 had non-dialysis CKD, peritoneal dialysis, and hemodialysis, respectively. Higher levels of baseline health-related hope were associated with lower levels of distress from fluid restriction after one year (per 10-point increase, 2.6 points (95% confidence interval, 1.0 to 4.1)); whereas the baseline score was not associated with the distress from fluid restriction at 2 years. Similarly, higher levels of baseline health-related hope were associated with lower levels of distress from dietary restriction after one year (per 10-point increase, 2.0 points (95% confidence interval, 0.3 to 3.6)); whereas the baseline score was not associated with the distress from dietary restriction at 2 years., Conclusions: Health-related hope, regardless of depression, can potentially mitigate long-term distress from fluid and dietary restrictions in patients with a wide range of CKD severities., Trial Registration: UMIN000054710., (© 2024. The Author(s).)

Introduction: Clinical guidelines recommend the use of the kidney failure risk equation (KFRE) to guide the referral of individuals with chronic kidney disease (CKD) to secondary kidney care services. People living with CKD frequently experience multiple long-term conditions (multimorbidity) and/or frailty. This may impact patients' or carers' perceptions of kidney failure in the context of other health problems and associated risks and emphasises the need for shared decision-making. This paper presents the research protocol for the exploration of patients' and healthcare professionals' perspectives on kidney failure risk and the use of the KFRE in the MULTIPle lOng-term condItions aNd frailTy study. This study aims to investigate patient and healthcare professionals' perspectives and expectations of the use of KFRE in individuals with CKD and multimorbidity and/or frailty, with a focus on shared decision-making., Methods and Analysis: Analysis of semistructured interviews with adults who have CKD and multimorbidity and/or frailty and focus groups with healthcare professionals (who are involved in caring for patients with CKD). Framework analysis, underpinned by normalisation process theory, will be used to develop codes and explore themes from the interviews and focus groups. Patient and public involvement has been pivotal to the study conceptualisation and will continue to be embedded throughout the study., Ethics and Dissemination: The study protocol has undergone peer review by the NHS Greater Glasgow and Clyde Research and Innovation team and has been granted ethical approval in August 2023 by the NHS Health Research Authority following a favourable opinion from the West of Scotland Research Ethics Committee (REC) 3 (IRAS ID: 325848, REC reference: 23WS/0119, Protocol number GN22RE559).The results of the research will be disseminated through peer-reviewed publications and conferences, as well as to patient and public involvement groups who have been involved in the study and through knowledge exchange events., Competing Interests: Competing interests: PBM reports lecture honoraria from Astrazeneca, Pharmacomsos, Bayer, Astellas, GSK and Boehringer Ingelheim outside the submitted work., (© Author(s) (or their employer(s)) 2024. Re-use permitted under CC BY. Published by BMJ.)

Introduction: Diabetes self-care among diabetic patients is crucial as it determines how patients care for their illness in their daily routine for better diabetes control. This study aims to calculate the average score for diabetes self-care among patients with type 2 diabetes mellitus and chronic kidney disease and to identify factors that are associated with this score., Materials and Methods: This cross-sectional study enrols patients over 18 years old with type 2 diabetes mellitus and chronic renal disease with an eGFR of less than 60 mL/min/1.73 m 2 in a tertiary hospital in Malaysia. The Malay version of the Summary of Diabetic Self-Care Activities (SDSCA) was used to assess diabetes self-care, the Malay version of the diabetes-related distress questionnaire (DDS-17) was used to assess diabetes distress, and the Malay version of the Patient Health Questionnaire-9 (PHQ-9) was used to assess depression. Data analysis was performed using both simple and multiple linear regression models to determine the associations between variables., Result: One hundred and seventy-six eligible patients were recruited for this study. The mean score for diabetes self-care is 3.62. The eGFR ( p = 0.002) and diabetes distress ( p  = 0.004) are the significant associated factors for diabetes self-care among type 2 diabetes mellitus patients with chronic kidney disease., Conclusion: The mean score for diabetes self-care indicated a moderate level of self-care. The eGFR level and diabetes distress were important factors influencing diabetes self-care practices., Competing Interests: The authors declare there are no competing interests., (©2024 Ramli et al.)

Background/objectives: Caregivers play an important role in supporting care recipients to navigate their health needs, including adherence to dietary recommendations, which are complex and multifaceted. This study aims to (i) describe the nutrition knowledge of caregivers of people with chronic kidney disease (CKD), and (ii) explore caregivers' perceptions of their role in providing healthy meals and nutrition support for care recipients., Methods: A cross-sectional study design employed a multi-strategy research approach. Caregivers (n = 78) of people with stage 1-5 CKD or post-transplant were recruited from a single centre. Their nutrition knowledge was assessed quantitatively with the revised General Nutrition Knowledge questionnaire. Theory-informed semi-structured interviews of a sub-sample (n = 12) qualitatively explored caregiver perceptions., Results: Most caregivers were female (75.6%) and cared for a male care recipient (87%; aged 74 (66; 80) yrs.). The caregivers (75.6%) provided a meal ≥6 times/week to their care recipient and had moderate nutrition knowledge (66.1 (60.5; 73.9)%). Four themes emerged describing the caregivers' perceptions of meal provision and nutrition support, including the following: (i) food literacy skills are valued; (ii) social support is important; (iii) caregivers' sense of social responsibility; and (iv) the management of complex and multifaceted dietary needs., Conclusions: The caregivers had moderate nutrition knowledge; they wanted to provide healthy meals and support to their care recipients to adhere to dietary recommendations. Targeted, co-designed nutrition education programs for caregivers may enhance nutrition care delivery to people with CKD.

Aim: To identify and synthesise qualitative studies on barriers and facilitators perceived by dialysis patients in relation to self-care and disease management., Design: Systematic review of qualitative studies., Data Sources: Qualitative study articles were extracted from PUBMED, MEDLINE, COCHRANE, WEB OF SCIENCE (WOS), CINAHL PsycINFO and EMBASE and electronic journals of the Spanish Society of Nephrology and Spanish Society of Nephrological Nursing until May 2022. Studies on barriers and/or facilitators affecting self-care and disease management expressed by people undergoing haemodialysis or peritoneal dialysis were included., Review Methods: The SPICE (Setting, Perspective, Intervention, Comparison and Evaluation) strategy was used to develop issues and subissues through the thematic synthesis of the qualitative findings. GRADE-CERQual was used to evaluate the articles., Results: From 172 articles, 15 qualitative articles about barriers and facilitators perceived by patients concerning self-care and disease management were finally included. Identified eight facilitators and four barriers., Conclusion: Patients perceived a significant number of barriers and facilitators. It is possible to identify which aspects facilitate self-management of their disease and to understand that the processes are individualised. This is why therapeutic strategies should be designed to foster the participation and empowerment of the person in the management of the disease., Implications for the Profession And/or Patient Care: Identifying the barriers and facilitators concerning the management of chronic kidney disease furnishes us with knowledge for individualised clinical practice and improved care processes., Impact: This review is the first to synthesise barriers and facilitators in haemodialysis patients about the management of their disease and treatment. The results enable the proposal of improvements in the training of healthcare personnel, clinical practice guidelines and action protocols to improve the daily life and management of the disease by patients. No patient or public contribution due to this is a systematic review., (© 2024 The Authors. Journal of Clinical Nursing published by John Wiley & Sons Ltd.)

Background: Caring for individuals with chronic kidney disease (CKD) is a highly demanding task that can adversely affect the physical and psychological well-being of caregivers., Objective: This study aimed to investigate the burden experienced by caregivers of patients undergoing hemodialysis (HD) in Oman and explore the factors associated with this burden, including demographic and medical characteristics., Methods: A descriptive cross-sectional was employed. Caregiver burden was assessed, and demographic and medical variables were examined among caregivers of HD patients. A total of 326 unpaid family caregivers completed the Zarit Burden Interview scale, demographics and some medical variables. Linear multiple regression analyses were conducted to identify factors linked to caregiver burden., Results: Of the caregivers, 62.9% reported a minimal burden, 21.8% experienced mild-to-moderate burden, 8.6% faced moderate-to-severe burden, and 6.7% encountered a severe burden. The final multiple regression model demonstrated statistical significance compared to the constant (F = 8.68, p < 0.001), with eight predictors explaining 18% of the variance, and caregivers' satisfaction with health emerged as the only significant predictor., Conclusion: A substantial portion of caregivers reported minimal burden. These findings suggest the need for further in-depth investigations into factors contributing to this favourable outcome. Furthermore, caregivers' satisfaction with health was the only significant predictor of their burden. Healthcare providers need to give special attention to this point and conduct periodic assessments of the primary caregivers' health. Implementing improvements in the healthcare system based on these findings could enhance the overall caregiving experience for HD patients and their caregivers., (© 2024. The Author(s), under exclusive licence to Springer Nature B.V.)

The mental health of youth with chronic kidney disease (CKD) has been increasingly recognized as an area of clinical need. The development of mental health concerns is influenced by a range of physiological, psychological, and environmental factors. Some of these factors are common across child development, but some are more unique to youth with CKD. Mental health concerns are associated with increased risk for a range of poor medical outcomes (e.g., adherence, risk of transplant rejection) and quality of life concerns. In this educational review, we discuss the current evidence base regarding the development of mental health concerns in youth with CKD. The review covers multiple domains including mood and anxiety disorders, traumatic stress, and neurodevelopmental disorders. Estimated prevalence and hypothesized risk factors are outlined, and the potential impact of mental health on medical care and functional outcomes are reviewed. Finally, we introduce options for intervention to support positive mental health and offer recommendations for building access to mental health care and improving the mental health education/training of medical professionals., (© 2024. The Author(s), under exclusive licence to International Pediatric Nephrology Association.)

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.)

Patient navigators enable adult patients to circumnavigate complex health systems, improving access to health care and outcomes. Here, we aimed to evaluate the effects of a patient navigation program in children with chronic kidney disease (CKD). In this multi-center, randomized controlled trial, we randomly assigned children (aged 0-16 years) with CKD stages 1-5 (including children on dialysis or with kidney transplants), from low socioeconomic status backgrounds, and/or residing in remote areas, to receive patient navigation at randomization (immediate) or at six months (waitlist). The primary outcome was self-rated health (SRH) of participating children at six months, using intention to treat analysis. Secondary outcomes included caregivers' SRH and satisfaction with health care, children's quality of life, hospitalizations, and missed school days. Repeated measures of the primary outcome from baseline to six months were analyzed using cumulative logit mixed effects models. Semi-structured interviews were thematically evaluated. Of 398 screened children, 162 were randomized (80 immediate and 82 waitlist); mean age (standard deviation) of 8.8 (4.8) years with 64.8% male. SRH was not significantly different between the immediate and wait-listed groups at six months. There were also no differences across all secondary outcomes between the two groups. Caregivers' perspectives were reflected in seven themes: easing mental strain, facilitating care coordination, strengthening capacity to provide care, reinforcing care collaborations, alleviating family tensions, inability to build rapport and unnecessary support. Thus, in children with CKD, self-rated health may not improve in response to a navigator program, but caregivers gained skills related to providing and accessing care., (Copyright © 2024 International Society of Nephrology. 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.)

Objectives: to develop a middle-range theory of the existential dimension of being-in-the-world of chronic kidney disease in the light of humanistic nursing theory., Methods: exploratory-descriptive, qualitative, Grounded Theory study, whose guiding question was: what theoretical relationships can be established between clinical practice carried out in the context of renal replacement therapies and the concepts of humanistic nursing theory? Data were collected through semi-structured interviews with nursing staff and chronic kidney disease patients., Results: a theory was developed that describes and explains the existential dimension of being-in-the-world of chronic kidney disease, identifying the qualitative evidence present in this context., Final Considerations: the theory contributes to clinical nursing practice qualification in nephrology, consolidating nursing as an art and science, because it arises from care practice and research, in addition to rescuing what differentiates it within the health disciplines, which is care par excellence.

Background: Understanding the patient perspective of frailty is critical to offering holistic patient-centred care. Rehabilitation strategies for patients with advanced chronic kidney disease (CKD) and frailty are limited in their ability to overcome patient-perceived barriers to participation, resulting in high rates of drop-out and non-adherence. The aim of this study was to explore patient perspectives and preferences regarding experiences with rehabilitation to inform a CKD/Frailty rehabilitation model., Methods: This qualitative study involved two focus groups, six individual semi-structured interviews and three caregiver semi-structured interviews with lived experience of advanced kidney disease and frailty. Interviews were recorded, transcribed, and coded for meaningful concepts and analysed using inductive thematic analysis using constant comparative method of data analysis employing Social Cognitive Theory., Results: Six major themes emerged including accommodating frailty is an act of resilience, exercise is endorsed for rehabilitation but existing programs have failed to meet end-users' needs. Rehabilitation goals were framed around return to normative behaviours and rehabilitation should have a social dimension, offering understanding for "people like us". Participants reported on barriers and disruptors to frailty rehabilitation in the CKD context. Participants valued peer-to-peer education, the camaraderie of socialisation and the benefit of feedback for maintaining motivation. Patients undertaking dialysis described the commodity of time and the burden of unresolved symptoms as barriers to participation. Participants reported difficulty envisioning strategies for frailty rehabilitation, maintaining a focus on the immediate and avoidance of future uncertainty., Conclusions: Frailty rehabilitation efforts in CKD should leverage shared experiences, address comorbidity and symptom burden and focus on goals with normative value., (© 2024. Crown.)

Background: Chronic Kidney Disease (CKD) patients encounter many obstacles that affect their physical and psychological well-being. The primary objective of the present study was to investigate potential correlates of optimism/pessimism in a sample of patients with CKD, including socio-demographics, body appreciation and disordered eating symptoms. As a secondary objective, we proposed to examine the psychometric properties of an Arabic translation of the Optimism-Pessimism Short Scale-2 (SOP2) before its use in our sample., Methods: A cross-sectional study was carried out between April and May 2023, enrolling 108 participants from three hospitals in Lebanon providing insights into their sociodemographic characteristics, physical activity levels, body appreciation, optimism, pessimism, and eating attitudes., Results: Results indicated that the Arabic-language adaptation of the SOP2 has good reliability coefficients. The two facets of the scale displayed a strong correlation to each other, and highly similar correlations with external study variables (i.e., household crowding index, physical activity, body appreciation, disordered eating), suggesting that the SOP2 can be interpreted as a unidimensional measure for the psychological dispositional optimism as proposed by the developers. Furthermore, findings revealed a strong positive correlation between body appreciation and optimism, suggesting that CKD patients who appreciate their bodies tend to exhibit a more optimistic outlook on life. Conversely, higher body appreciation is associated with lower pessimism, indicating that a positive body image may mitigate feelings of hopelessness and despair in CKD patients., Conclusion: This study contributes to the literature in two ways. First, it offers the Arabic SOP2 as an brief tool to administer, and psychometrically sound instrument that can be useful for clinical and research purposes. Second, it unveils a clear correlation between higher body appreciation and a more optimistic, less pessimistic mindset in patients with CKD., Competing Interests: The authors have declared that no competing interests exist., (Copyright: © 2024 Hajj-Moussa et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.)

Older age is linked with poorer self-care in the chronic kidney disease (CKD) setting. Informal health supporters (family members and friends) are critical sources of self-care support, but much remains unclear about the characteristics and implications of received support among this patient population. We examined how received self-care support (amount and type) related to positive (CKD management self-efficacy) and negative (depressive symptoms) psychosocial health correlates of self-care in 536 adults aged 65 years and older with non-dialysis-dependent CKD. Participants who received a greater amount of support reported less CKD management self-efficacy and more depressive symptoms. We did not observe associations between self-care support type and psychosocial health. Further research is needed to clarify our findings, especially studies that investigate causality and contextual influences., Competing Interests: The authors reported no actual or potential conflict of interest in relation to this nursing continuing professional development (NCPD) activity., (Copyright© by the American Nephrology Nurses Association.)

Chronic kidney disease (CKD) has considerable effects on the quality of life of female patients. Receiving the diagnosis and beginning renal replacement therapy (RRT) has a great personal impact on patients. The purpose of this study was to describe the experience of female patients with CKD at an ambulatory dialysis unit regarding diagnosis, life changes, and initiation of RRT. A qualitative exploratory study was conducted based on a social contructivism framework. Participants were recruited using purposeful sampling. In total, 18 women who received treatment for CKD with RRT were included. The women were attending the Ambulatory Dialysis Unit at a hospital belonging to the public health system of Madrid (Spain). Unstructured and semi-structured in-depth interviews, researchers' field notes, and women's personal letters were used. A systematic text condensation analysis was performed. The criteria used to control trustworthiness were credibility, transferability, dependability, and confirmability. Two themes emerged from the data: (a) A turning point in their lives, and (b) The emotional journey of beginning RRT. The diagnosis of CKD and the beginning of treatment implies changing routines and adapting to a new life with CKD. The first dialysis and puncture of the arteriovenous fistula is a major experience. Support from other CKD patients with more experience is perceived as a necessity and a tool to share their experiences and resolve doubts among peers. The diagnosis and initiation of RRT leads to numerous changes in the lives of women with CKD, which may influence the acceptance of treatment., Competing Interests: Declaration of Conflicting InterestsThe authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Background: This study evaluated parenting stress, anxiety, and depression symptoms and their associated factors in parents of children with chronic kidney disease (CKD)., Methods: This cross-sectional study compared parents of patients with CKD (0-18 years) with a matched control group of parents of healthy children. Both groups completed the Parenting Stress Index - Short Form, the Hospital Anxiety and Depression Scale, and a sociodemographic questionnaire., Results: The study group consisted of 45 parents (median age 39; 32 mothers) of CKD patients (median age 8; 36% female). Nearly 75% of children had CKD stages 2, 3, or 4, and 44.5% had congenital anomaly of the kidney and urinary tract. Five children (11%) were on dialysis, and 4 (9%) had a functioning kidney graft. Compared with parents of healthy children, more stress and anxiety symptoms were reported. Since the CKD diagnosis, 47% of parents perceived a deterioration of their own health, and 40% reduced work on a structural basis. Higher levels of stress, anxiety, and depression symptoms were associated with a more negative perception of own health, and more child medical comorbidities and school absence., Conclusions: This study showed higher levels of parenting stress and anxiety symptoms in parents of children with CKD compared with parents of healthy children. This was associated with a less positive perception of their own health, especially if the child had more medical comorbidities or more absence from school. Psychosocial interventions to reduce the parental burden should be integrated in the standard care of pediatric nephrology departments., (© 2024. The Author(s), under exclusive licence to International Pediatric Nephrology Association.)

Background: Self-management is a key component of successful chronic kidney disease (CKD) management. Here, we present the findings from the internal pilot of a multicentre randomised controlled trial (RCT) aimed to test the effect of a digital self-management programme ('My Kidneys & Me' (MK&M))., Methods: Participants (aged ≥18 years and CKD stages 3-4) were recruited from hospital kidney services across England. Study processes were completed virtually. Participants were randomised 2:1 to either intervention (MK&M) or control group. The first 60 participants recruited were included in a 10-week internal pilot which assessed study feasibility and acceptability against pre-specified progression criteria: 1) eligibility and recruitment, acceptability of 2) randomisation and 3) outcomes, 4) MK&M activation, and 5) retention and attrition rates. Semi-structured interviews further explored views on trial participation., Results: Of the 60 participants recruited, 41 were randomised to MK&M and 19 to control. All participants completed baseline measures and 62% (n=37) completed post-intervention outcome measures. All progression criteria met the minimum thresholds to proceed. Nine participants were interviewed. The themes identified were satisfaction with study recruitment processes (openness to participate, reading and agreeing to "terms and conditions"), acceptability of study design (remote study participation, acceptability of randomisation, completion of online assessment(s)), and methods to improve recruitment and retention (personalised approach, follow-up communication)., Conclusion: This internal pilot demonstrated the feasibility and acceptability of a virtually run RCT. Progression criteria thresholds to proceed to the definitive RCT were met. Areas for improvement were identified and protocol amendments were made to improve trial delivery., (© 2024 The Authors. Journal of Renal Care published by John Wiley & Sons Ltd on behalf of European Dialysis & Transplant Nurses Association/European Renal Care Association.)

Background: Living with chronic kidney disease is stressful as the disease and its treatments impact on everyday physical, psychological, and social activities. As this disease has a long trajectory, it is important to understand everyday life experiences of those at different points along this trajectory., Objectives: To explore the impact of chronic kidney disease and its treatment on everyday life., Design: Descriptive qualitative design PARTICIPANTS: Twenty-five adults with chronic kidney disease across various grades were purposively recruited., Approach: Data were collected using semistructured interviews. Deductive content analysis informed by the revised Wilson and Cleary model was used to analyse data., Findings: There were four themes. Theme 1, experiencing deterioration of kidney function, reflected the physical and psychological problems experienced by participants. Theme 2, changes that happened to me and my family, explained the subsequent limitations in their physical, social and role functioning. Theme 3, responding to a new normal, identified adjustments needed in everyday life to cope with the disease and its treatments. The final theme, thinking ahead and making a decision, captured the future plans and decisions needed while living with chronic kidney disease., Conclusions: People with chronic kidney disease experience complex challenges such as greater symptom burden and functional limitations across the disease grades which impact on their everyday life. Nurses' recognition of these challenges is crucial for identifying and addressing unmet needs. Early individualised interventions, such as routine symptom assessment and management strategies that improve the wellbeing of people are needed., (© 2023 European Dialysis & Transplant Nurses Association/European Renal Care Association.)

Background: Depression is common in people with chronic kidney disease, yet little is known about how depression is identified and managed as part of routine kidney care., Objectives: The primary objective was to survey all UK adult kidney centres to understand how depression is identified and managed. A secondary objective was to broadly describe the variability in psychosocial care., Design: Online survey., Methods: The survey comprised of three sections: (1) general kidney care, (2) psychological provision and (3) social work provision., Results: 48/68 (71%) of centres responded to the general survey with 20 and 13 responses from psychological and social work module respectively. Only 31.4% reported having both in centre psychological and social work practitioners. Three centres reported no access to psychosocial provision. Of the 25 centres who reported on pathways, 36.0% reported having internal pathways for the identification and management of depression. Within services with psychological provision, screening for depression varied across modality/group (e.g., 7.1% in mild/moderate chronic kidney disease vs. 62.5% in kidney donors). Cognitive Behavioural Therapy and Acceptance and Commitment Therapy were the most common interventions offered. Most psychosocial services were aware of the National Institute for Health and Care Excellence guidelines for managing depression in long-term conditions (n = 18, 94.7%) yet few fully utilised (n = 6, 33.3%). Limited workforce capacity was evident., Conclusions: There is considerable variability in approaches taken to identify and treat depression across UK kidney services, with few services having specific pathways designed to detect and manage depression. Workforce capacity remains a significant issue., (© 2024 The Authors. Journal of Renal Care published by John Wiley & Sons Ltd on behalf of European Dialysis & Transplant Nurses Association/European Renal Care Association.)

Background: Dialysis is a life-sustaining treatment for patients with advanced kidney failure, but it is extremely burdensome. Despite this, there are very few tools available to assess treatment burden within the dialysis population., Objective: To conduct a scoping review of generic and disease-specific measures of treatment burden in chronic kidney disease, and assess their suitability for use within the dialysis population., Design: We searched CINAHL, MEDLINE and the Cochrane Library for kidney disease-specific measures of treatment burden. Studies were initially included if they described the development, validation or use of a treatment burden measure or associated concept (e.g., measures of treatment satisfaction, quality of life, illness intrusiveness, disease burden etc.) in adult patients with chronic kidney disease. We also updated a previous scoping review exploring measures of treatment burden in chronic disease to identify generic treatment burden measures., Results: One-hundred and two measures of treatment burden or associated concepts were identified. Four direct measures and two indirect measures of treatment burden were assessed, using adapted established criteria, for suitability for use within the dialysis population. The researchers outlined eight key dimensions of treatment burden: medication, financial, administrative, lifestyle, health care, time/travel, dialysis-specific factors, and health inequality. None of the measures adequately assessed all dimensions of treatment burden., Conclusion: Current measures of treatment burden in dialysis are inadequate to capture the spectrum of issues that matter to patients. There is a need for dialysis-specific burdens and health inequality to be assessed when exploring treatment burden to advance patient care., (© 2023 The Authors. Journal of Renal Care published by John Wiley & Sons Ltd on behalf of European Dialysis & Transplant Nurses Association/European Renal Care Association.)

Background : The causes of mental health problems among mothers of children with chronic kidney diseases (CKD) associated with childcare are still not fully understood. This study, thus, has aim to assess the intensity of caregiver burden, depression and quality of life levels in mothers of children with CKD compared to a control group. It also aims to identify determinants associated with mental health outcomes. Methods: Mothers of children diagnosed with CKD who were followed up in Pediatric Nephrology outpatient clinics were included as the case group. Mothers with similar demographic characteristics were taken as the control group. During the study, 72 children with CKD, 78 control children and their mothers were enrolled. The study data was obtained using the Sociodemographic Data Form (SDF) developed by the researchers, the Zarit Burden Interview (ZBI), the Beck Depression Inventory (BDI), and The World Health Organization Quality of Life (WHOQOL-Bref). Results: The groups did differ significantly in terms of maternal psychopathology ( p  = .024). The most common maternal psychopathology among mothers was Major Depressive Disorder. Mothers of children with CKD had significantly higher level of caregiver burden and depression levels. Quality of life levels among mothers of children with CKD were significantly decreased compared to controls. Caregiver burden was found to predict quality of life in mothers of children with CKD (β = -0.539; p  < .050). Conclusion: Caregiving burden, depression, and poor quality of life are common among mothers of children with CKD. Addressing caregiver burden may be beneficial for quality life of mothers.

Background: Patients with chronic kidney disease and their family members experience a number of lifestyle changes caused by the illness. The value of advance care planning includes understanding health status and options for future care, communication between close family members, and identification of wishes and preferences for care and treatment in relation to family and everyday life., Objective: Explore how patients with chronic kidney disease and their families experience everyday life and how they experience having to make choices about treatment., Design: An explorative study using a qualitative method with a phenomenological-hermeneutic approach., Participants: Twelve patients with chronic kidney disease without kidney replacement therapy who were considering their treatment options and eight family members., Approach: Individual semistructured interviews with a narrative approach were conducted between August 2021 and March 2022. The data were analysed using Ricoeur's interpretation theory on three levels: naïve reading, structural analysis and critical interpretation and discussion., Findings: One main theme was generated: Family dynamics in a life-changing process. From this, three subthemes were derived: Living in an ordinary life placed in a waiting position, The dilemma of readiness to share and Feelings of being left alone., Conclusion: There are changes in family roles and in identity and a desire to maintain the known and ordinary life. Living with chronic kidney disease as a part of daily life is managed differently in the family, which can lead to feelings such as sadness, frustration and loss of shared life and resilience., (© 2023 The Authors. Journal of Renal Care published by John Wiley & Sons Ltd on behalf of European Dialysis & Transplant Nurses Association/European Renal Care Association.)

Background: To assess depression, anxiety, and other psychological disorders in adolescents with chronic kidney disease (CKD) and determine the significant factors and the effect of digital media use on its scores among these patient groups., Methods: The study was conducted as a cross-sectional study and included 84 adolescents with CKD and 68 healthy controls. The participants completed the Revised Child Anxiety and Depression Scale (RCADS). We recorded their age, gender, the most problematic issue in their lives, coping methods with problems, and online applications they prefer in their leisure time., Results: Elevated rates (scores > 70) of separation anxiety, panic disorder, obsession, depression, total anxiety, and total depression scales were statistically higher in the CKD group. Separation anxiety, panic disorder, obsession, total anxiety, and total depression scales were higher in girls, and panic disorder, obsession, depression, total anxiety, and total depression scores were higher in younger ages in multivariate analysis. In the CKD group, family issues/problems increased panic disorder, obsession, depression, total anxiety, and total depression scales. Crying in tears/yelling response in children while facing a problem was associated with increased separation anxiety and social phobia rates. Also, preferring video applications was associated with separation anxiety and messaging applications with depression, total anxiety, and total depression., Conclusions: Adolescents with CKD are at risk for depression, anxiety, obsession, and panic disorders. Also, crying in tears/yelling response may be at greater risk for anxiety among CKD adolescents. Early psychiatric evaluation and routine psychiatric follow-ups initiated early may improve the mental health of this vulnerable population., (© 2024. The Author(s).)

Context: Despite recommendations for shared decision-making and advanced care planning (ACP) for people with chronic kidney disease (CKD), such conversations are infrequent. The MY WAY educational and patient coaching intervention aimed to promote high-quality ACP., Objectives: This qualitative substudy sought to gain participant feedback on the MY WAY ACP coaching intervention, and how it impacted their wishes, perceptions of kidney care, and factors that helped them reflect on ACP., Methods: We conducted semi-structured interviews with participants from the intervention arm of the MY WAY study about their prior experience with ACPs in the context of CKD, impressions of the MY WAY intervention, and outcomes of the MY WAY intervention. We conducted a qualitative thematic analysis of transcribed interviews., Results: Among 15 intervention participants, the following major themes emerged: 1) Patients with CKD approach ACP with varied experiences; 2) Patients felt the MY WAY coaching intervention supported ACP by reinforcing values; and 3) Patients found the coaching intervention focused on end of life, but not necessarily on decision making regarding CKD., Conclusion: Participants perceived the coaching intervention to have high utility in facilitating ACP, but had a limited impact on CKD-specific decision-making. These findings suggest that the coach plays a crucial role in comfort with ACP conversations and that ACP readiness and engagement may not correlate with treatment preferences or understanding of CKD treatment decisions., (Copyright © 2024 The Authors. Published by Elsevier Inc. All rights reserved.)

Background: Children with chronic kidney disease (CKD) require comprehensive assessments, including medical and quality of life (QoL) evaluations. Few studies have been conducted in developing countries., Methods: This cross-sectional study included 2-18-year-old patients who were categorized into 4 groups: the CKD stage 2-3, stage 4-5, stage 5 with dialysis (D), and kidney transplantation (KT) groups. QoL was measured using the Pediatric Quality of Life Inventory™ (PedsQL™) version 4.0; relationships between different factors and QoL were determined using multivariable linear regression analysis., Results: Eighty-seven patients (mean age: 13.3 (4.1) years) were included. The self-reported total scores were 77.5 (12.5), 78.9 (11.2), 77.4 (16.2), and 76.1 (10.9) in the stage 2-3, stage 4-5, stage 5D and KT groups, respectively. Parent-reported scores showed a weak-to-moderate correlation with self-reported scores (r = 0.12-0.42), with total scores of 71.8 (12.7), 69.5 (14.9), 63.4 (14.8), and 70.8 (18.1) in the stage 2-3, 4-5, 5D and KT groups, respectively. Multivariable linear regression revealed that the parent-reported score in the stage 5D group was 15.92 points lower than that in the stage 2-3 group (p = 0.02); the score in the low maternal education group was 10.13 points lower than that in the high maternal education group (p = 0.04)., Conclusions: Parent-reported scores showed weak-to-moderate correlation with self-reported scores. Patients with CKD stage 5D and patients with low maternal education had lower QoL. Regular QoL assessment is recommended for patients with advanced CKD and those with socioeconomic vulnerabilities., Competing Interests: Declarations. Ethics approval: This study was approved by the Institutional Review Board of Siriraj Hospital. Consent to participate: Informed assent and consent were obtained from all participants and their parents. Consent for publication: Not applicable. Competing interests: The authors declare no competing interests., (© 2024. The Author(s).)

Background: The incidence of chronic disease is increasing worldwide which, in turn, increases the demand for healthcare services. To meet these demands, healthcare systems are adapting their services in order to reduce treatment costs and ensure coherence for patients with multiple diseases. One form of adaptation is shared outpatient consultations between internal medical specialties. However, little is known about how patients interact with multiple clinicians in shared consultations., Aim: This project aimed to explore how patients with diabetes and chronic kidney disease interact with multiple clinicians in a shared outpatient setting., Research Methods: We performed a qualitative ethnographic study, combining focused participant observations with informal field interviews. We included 17 participants, nine males and eight females with a mean age of 67.3 in the project. The data analysis was guided by Braun and Clarke's reflexive thematic analysis and Arthur Kleinman's theory of illness and disease., Results: We found one over-arching theme: 'A consultation which encompassed both illness and disease' and four subthemes: (1) 'The medical focal point' pertained to the focus on physiological measurements in dialogue between patients and clinicians. (2) 'The possibility of negotiations' illustrated how decisions about dialysis and pharmacological treatment were based on negotiations. (3) 'Speaking different languages' displayed how patients used alternative illness-based explanations whereas clinicians tended to use biomedical language. (4) 'Perceptions of everyday life' concerned what patients considered was best for them when managing their illness and everyday lives., Conclusion: Patients present information on how they balance life with physiological and psychosocial challenges. When clinicians employ a biomedical perspective, opportunities to gain information on patients' illness behaviours or cues to negotiate are missed. Patients prioritise functioning on a daily level over following treatment regimes. These findings are tenuous and require verification in similar studies in similar settings., Short Phrases: Shared Outpatient Clinic, Patient-clinician interactions., (© 2024 The Author(s). Scandinavian Journal of Caring Sciences published by John Wiley & Sons Ltd on behalf of Nordic College of Caring Science.)

Background: Chronic kidney disease-associated pruritus is a distressing symptom and has a far-reaching impact on patients' sleep and quality of life for most patients receiving haemodialysis. Traditional therapies have limited effectiveness., Objectives: This study aimed to invent a self-operated ice roller and evaluate its efficacy in relieving pruritus, sleep quality, and quality of life., Design: This study was experimental with a two-arm parallel group design., Participants: A convenient sampling method was used to recruit 60 patients receiving haemodialysis who reported pruritus (5D-Itch Scale score >5) lasting over 4 weeks in Taiwan. The participants were randomly assigned to one of two groups: the intervention group used an ice roller for 7 days, while the control group received no anti-pruritus treatment., Measurements: This study was experimental with a two-arm parallel group design. The measurement instruments included the 5D-Itch Scale, Pittsburgh Sleep Quality Index and WHOQOL-BREF-Taiwan Version. The analysis of covariance, chi-square, Independent t tests, and partial Eta 2 (η 2 p) were used to analyse the data., Results: The participants' mean age was 62.77 years. Application of the ice roller significantly decreased overall pruritus (p < .05; η 2 p = .09) and distribution of pruritus-associated bodily parts (p = .03; η 2 p = .08). There were no statistically significant differences in sleep quality and related indicators between the experimental and control groups at the study endpoint. Regarding quality of life, only the social relationship domain significantly differed between the two groups (p = .02; η 2 p = .08)., Conclusions: The ice roller can decrease pruritus and its distribution in patients receiving haemodialysis, serving as an adjunct therapy alongside conventional anti-pruritus treatments., (© 2024 European Dialysis & Transplant Nurses Association/European Renal Care Association.)

This qualitative study aimed to explore the experiences of 11 adults with chronic kidney disease (CKD) undergoing evaluation for kidney transplant (KT) and examine the role played by the nurse in the process. Employing a descriptive phenomenology approach, semi-structured interviews were conducted between October 2022 and July 2023. Thematic analysis, facilitated by Atlas. ti software, revealed a systemic management diagram with "The candidate for kidney transplant and their reality" at the center, followed by "The process of chronic kidney disease and kidney transplantation," and concluding with the most distal category centered on "The kidney transplant access nurse." This organizational framework provided insights into the layers of relationships between emerging themes. The findings underscored the complexity and multidimensionality of the CKD and KT process, emphasizing the nurse's pivotal role as a guide and protector throughout the evaluation process for accessing kidney transplantation. The convergence of results with existing literature highlighted the need to address challenges such as lack of time, resources, and emotional support to enhance the quality of care. Recognizing the nurse's crucial importance in this process, the study emphasizes the significance of addressing these challenges to improve patient care and calls for attention to the nurse's role in guiding individuals through the intricate journey of CKD and kidney transplantation., (© 2024 The Author(s). Research in Nursing & Health published by Wiley Periodicals LLC.)

Rationale & Objective: Recent evidence suggests people with nondialysis chronic kidney disease (ND-CKD) experience a substantial burden of symptoms, but informative large-scale studies have been scarce. We assessed the prevalence of symptoms and the association of overall symptom burden with quality of life in patients with moderate to severe CKD., Study Design: Cross-sectional study., Setting & Participants: 4,430 patients with ND-CKD stages 3-5 enrolled in the Chronic Kidney Disease Outcomes and Practice Patterns Study (CKDopps) in Brazil, France, and the United States between 2013 and 2021., Exposure: 13 individual patient-reported symptoms from the Kidney Disease Quality of Life Short Form (KDQOL-SF) questionnaire and an overall symptom burden score (low, intermediate, and high)., Outcome: Physical and mental component summary scores (PCS and MCS) of the KDQOL-SF., Analytical Approach: Adjusted prevalence ratios and generalized estimating equations., Results: Patients (mean age, 68 years; 40% women; mean baseline estimated glomerular filtration rate [eGFR], 30mL/min/1.73m 2 ) were very much to extremely bothered by numerous symptoms ("soreness in muscles," 23%; "washed out or drained," 21%; "cramps, shortness of breath, dry skin, diminished sex life, or numbness in hands or feet," 14%-17%). The adjusted prevalences of "cramps," "washed out or drained," "lack of appetite," "nausea/upset stomach," and "sex life" were greater with more severe CKD and in women (except for "sex life"). A high overall symptom burden was more common in women, in France, and in patients with severe albuminuria and various comorbidities, but not with lower eGFR. The PCS and MCS scores were 13.4 and 7.7 points lower, respectively, for high versus low overall symptom burden., Limitations: Generalizability limited to patients under nephrology care, residual confounding, and inaccurate Brazilian translation of some symptoms., Conclusions: The high symptom burden observed in this large cohort of ND-CKD patients across 3 diverse countries and its strong association with poorer health-related quality of life should inform clinical management of and clinical research in CKD., Plain-Language Summary: Little is known about symptoms in patients with non-dialysis-dependent chronic kidney disease (ND-CKD). In the Chronic Kidney Disease Outcomes and Practice Patterns Study, which enrolled 4,430 patients with CKD stages 3-5 in Brazil, France, and the United States, patients most often reported soreness in muscles, feeling washed out or drained, cramps, shortness of breath, dry skin, altered sex life, and numbness in hands or feet. Cramps, feeling washed out or drained, lack of appetite, and nausea were more often reported at lower levels of kidney function. The overall symptom burden was higher in women than men, in French than in Brazilian or US patients, and in those with severe albuminuria. The higher the symptom burden, the lower were the physical and mental health quality of life scores. The high symptom burden observed in this large cohort of ND-CKD patients across 3 diverse countries and its strong association with poorer health-related quality of life should inform clinical management of and clinical research in CKD., (Copyright © 2024 National Kidney Foundation, Inc. Published by Elsevier Inc. All rights reserved.)

Rationale: Artificial Intelligence (AI) large language models (LLM) are tools capable of generating human-like text responses to user queries across topics. The use of these language models in various medical contexts is currently being studied. However, the performance and content quality of these language models have not been evaluated in specific medical fields., Aims and Objectives: This study aimed to compare the performance of AI LLMs ChatGPT, Gemini and Copilot in providing information to parents about chronic kidney diseases (CKD) and compare the information accuracy and quality with that of a reference source., Methods: In this study, 40 frequently asked questions about CKD were identified. The accuracy and quality of the answers were evaluated with reference to the Kidney Disease: Improving Global Outcomes guidelines. The accuracy of the responses generated by LLMs was assessed using F1, precision and recall scores. The quality of the responses was evaluated using a five-point global quality score (GQS)., Results: ChatGPT and Gemini achieved high F1 scores of 0.89 and 1, respectively, in the diagnosis and lifestyle categories, demonstrating significant success in generating accurate responses. Furthermore, ChatGPT and Gemini were successful in generating accurate responses with high precision values in the diagnosis and lifestyle categories. In terms of recall values, all LLMs exhibited strong performance in the diagnosis, treatment and lifestyle categories. Average GQ scores for the responses generated were 3.46 ± 0.55, 1.93 ± 0.63 and 2.02 ± 0.69 for Gemini, ChatGPT 3.5 and Copilot, respectively. In all categories, Gemini performed better than ChatGPT and Copilot., Conclusion: Although LLMs provide parents with high-accuracy information about CKD, their use is limited compared with that of a reference source. The limitations in the performance of LLMs can lead to misinformation and potential misinterpretations. Therefore, patients and parents should exercise caution when using these models., (© 2024 John Wiley & Sons Ltd.)

Background: Chronic kidney disease (CKD) is the third most common cause of death after cancer and heart disease. The continuous treatment of children with CKD was greatly challenged during the COVID-19 pandemic, which significantly impacted the CKD children's prognosis and the caregivers' psychological status. However, the influence mechanism of socioeconomic status, medical delay duration, traffic pressure, and online consultation duration on caregivers' hope and psychological resilience still lacks relevant evidence., Methods: This study investigated the general social information, hope, and psychological resilience of 247 caregivers with CKD in 13 provinces of China in March 2020. Factor analysis and an exploratory Structural Equation Model ( SEM ) were used to find the best-fit model, and Bootstrapping was used to calculate the 95% CI of indirect effects., Results: The factor analysis obtained four common factors, namely, socioeconomic status (annual family income, education, and career stability), medical accessibility (online consultation duration, medical delay duration, and traffic pressure), hope (positive attitude, positive action, and intimate relationship) and psychological resilience (optimism, tenacity, and strength), with the cumulative contribution rate of 65.34%. Bootstrapping obtains the socioeconomic status β = 0.30 (95% CI [0.14, 0.47], P = 0.002), medical accessibility β = 0.31 (95% CI [0.12, 0.47], P = 0.002), and hope β = 0.40 (95% CI [0.27, 0.52], P = 0.002) has a direct impact on psychological resilience of CKD children caregivers, followed by medical accessibility β = 0.20 (95% CI [0.10, 0.38], P = 0.001) and hope β = 0.23 (95% CI [0.16, 0.32], P = 0.001) plays a mediating role between socioeconomic status and psychological resilience. The indirect impact effect β = 0.35 (95% CI [0.25, 0.50], P = 0.001) is greater than the direct impact effect β = 0.30 (95% CI [0.14, 0.47], P = 0.002)., Conclusions: Sufficient attention should still be given to children with immunodeficiency after the COVID-19 pandemic, such as CKD, to avoid infection of deadly. Secondly, the government should vigorously develop Primary medical institutions to ensure efficient treatment of severe patients in tertiary hospitals; Finally, the professional literacy of medical workers in remote diagnosis and treatment should be improved to enhance the country's emergency response capacity for similar major public events and the requirements for normalised epidemic prevention and control., (© 2024. The Author(s).)

Background: Social determinants of health (SDoH) are increasingly recognized as crucial factors affecting the well-being of pediatric chronic kidney disease (CKD) patients. This study explores the impact of SDoH on the quality of life (QoL) of children with CKD in Saudi Arabia., Methods: This observational, descriptive, cross-sectional study included 50 participants with CKD stages three to five, as well as children with end-stage renal disease (ESRD) undergoing peritoneal dialysis (PD) or hemodialysis (HD) in Riyadh, Saudi Arabia. Data were collected from children and their caregivers using a validated Arabic-adapted version of the Pediatric Quality of Life Inventory (PedsQL) 3.0 and an SDoH survey., Results: The study revealed that access to education significantly affects pediatric QoL (H/Z score 2.825; P-value 0.005), and the lack of dietary recommendations was identified as a critical factor (H/Z score 1.441; P-value 0.029). ESRD patients on PD from larger families reported better QoL, whereas lower family income was associated with reduced QoL in PD patients (P-value 0.048). Compared to those in earlier stages of CKD, ESRD patients showed lower QoL (H/Z score 2.154; P-value 0.031)., Conclusion: Our study provides initial insights into the relationship between SDoH and the QoL of children with CKD in Saudi Arabia. It calls for a comprehensive approach that includes these determinants in care strategies to improve patient outcomes and QoL., (© 2024. The Author(s).)

Background: Caregivers of children and young people with chronic kidney disease (CKD) face challenging circumstances on a daily basis; however, the difficulties they experienced during the COVID-19 pandemic, as well as potentially positive experiences, are not yet fully understood. The aim of this study was to explore the pandemic-related experiences of these caregivers., Methods: Twelve caregivers were recruited from a hospital-based pediatric renal program; eight families were posttransplant. Caregivers participated in virtual semistructured interviews conducted between March 2021 and November 2022. They provided responses to open-ended questions concerning how the pandemic affected their child with CKD, their family, and themselves. Interviews were transcribed and coded using thematic analysis., Results: Four main themes were identified: (1) Family Life, which included disruptions in routine, reduced social supports, and changes in the quality of family relationships; (2) Mental Health and Coping, which included increased anxiety and positive coping strategies; (3) Work and School Life, which included changes to work and school; and (4) Health and Health Care Systems, which included virtual health care and public health restrictions., Conclusions: Despite facing profound challenges, caregivers identified both positive and negative aspects of their pandemic experiences. Their coping strategies highlighted individual and family resilience characteristics. Implications for health care providers, including future pandemic planning, support for the transition from in-person to virtual care, and strategies to better address barriers to resources for families of children with chronic kidney disease were discussed., (© 2024 The Author(s). Pediatric Transplantation published by Wiley Periodicals LLC.)

Aim: This study aims to explore the experiences of individuals with chronic kidney disease (CKD) undergoing haemodialysis and their caregivers, focusing on the disease's impact and the treatment process., Background: In Sri Lanka, CKD is a growing health concern, particularly affecting farming communities and contributing to the strain on the biomedical healthcare system. Despite increasing awareness of CKD's physical implications, its psychosocial impact remains underexplored. This study seeks to fill this gap, aiming to inform culturally sensitive interventions and improve the healthcare system's responsiveness to the unique needs of Sinhala Buddhist individuals with CKD and their caregivers., Design: An exploratory qualitative study., Method: Semistructured interviews were conducted with 10 individuals undergoing haemodialysis and 5 caregivers at a dialysis unit. The interviews were audio-recorded, transcribed and analysed using conventional qualitative content analysis., Findings: The analysis revealed three interrelated main themes: (1) impact on standard of living (quality of life), (2) coping strategies and (3) medical experience, with a notable influence of traditional beliefs and practices., Conclusion: The findings highlight the need for a holistic approach to CKD management that integrates physical, emotional, psychological and social aspects, considering the significant role of traditional influences. Further research is essential to develop effective interventions that can enhance the quality of life for CKD., Patient or Public Contribution: The lived experiences of Sinhala Buddhist individuals with CKD and their caregivers served as a cornerstone, providing profound insights into the impact of the condition on their lives. Throughout the study, these participants played an instrumental role in refining the research's cultural sensitivity and relevance. Their engagement extended beyond the data collection phase to encompass feedback sessions, where they actively shared their perspectives. This ongoing collaboration ensured the study's depth and applicability to real-world experiences. By actively involving those directly affected by CKD, this collaborative approach safeguards that the study remains rooted in their voices and addresses their unique needs., Reporting Method: This study adhered to relevant EQUATOR guidelines (the COREQ checklist)., Trial Registration: This study is not a clinical trial, and thus, registration is not applicable., (© 2024 The Author(s). Health Expectations published by John Wiley & Sons Ltd.)

Rationale & Objective: Although functional impairment is common among older adults with chronic kidney disease (CKD), functional reserve before an acute health event and physical resilience after the event have not been characterized in this population. The purpose of this study was to identify distinct patterns of physical function before and after an acute health event among older veterans with stage 4 CKD., Study Design: Prospective cohort study., Setting & Participants: National sample of veterans≥70 years of age with an estimated glomerular filtration rate (eGFR) of<30mL/min/1.73m 2 who had an acute care encounter (emergency department visit or hospitalization) during the follow-up period (n = 272)., Predictors: Demographic characteristics, eGFR, basic and instrumental activities of daily living (ADL/IADL) difficulty, symptom burden, cognition, depressive symptoms, social support., Outcome: Function measured using the life-space mobility assessment obtained by telephone survey before and after an acute care encounter., Analytical Approach: General growth mixture models to identify classes of functional trajectories. Calculation of percentages for demographic characteristics and means for eGFR, ADL/IADL difficulty, symptom burden, cognition, depressive symptoms, and social support by trajectory class., Results: Four trajectory classes were identified and characterized by different levels of life-space mobility before (reserve) and change in life-space mobility after (resilience) an acute care encounter: (1) low reserve, low resilience (n=91), (2) high reserve, high resilience (n=23), (3) moderate reserve, moderate resilience (n=89), and (4) high reserve, low resilience (n=69). Mean levels of ADL/IADL difficulty, symptom burden, cognition, and depressive symptoms, but not demographic characteristics, eGFR, or social support, differed by trajectory class., Limitations: Veteran cohort was primarily male., Conclusions: Among older adults with stage 4 CKD, physical function trajectories before and after an acute health event vary. Integrating reserve and resilience into care for this population may be useful for anticipating changes in function and developing tailored treatment plans., (Published by Elsevier Inc.)

Depression is common in patients with chronic kidney disease (CKD). Experimental studies suggest the role of urea toxicity in depression. We assessed both the incidence of antidepressant prescriptions and depressive symptoms (measured by CESD (Center for Epidemiologic Depression) scale) in 2505 patients with CKD (Stage 3-4) followed up over 5 years in the Chronic Kidney Disease Renal Epidemiology and Information Network (CKD-REIN) cohort. We used a joint model to assess the association between the serum urea level and incident antidepressant prescriptions, and mixed models for the association between the baseline serum urea level and CESD score over the 5-year follow-up. Among the 2505 patients, 2331 were not taking antidepressants at baseline. Of the latter, 87 started taking one during a median follow-up of 4.6 years. After adjustment for confounding factors, the hazard ratio for incident antidepressant prescription associated with the serum urea level (1.28 [95%CI, 0.94,1.73] per 5 mmol/L increment) was not significant. After adjustment, the serum urea level was associated with the mean change in the CESD score (β = 0.26, [95%CI, 0.11,0.41] per 5 mmol/L increment). Depressive symptoms burden was associated with serum urea level unlike depression events. Further studies are needed to draw firm conclusions and better understand the mechanisms of depression in CKD.

Background: Chronic kidney disease (CKD) is one of the major health issues in Pakistan, exerting notable effects on both the physical and mental well-being of individuals undergoing haemodialysis. Of particular concern to healthcare professionals is the potential adverse influence of haemodialysis on the lives of patients with CKD residing in rural areas of the country. This study will explore and describe the lived experiences and needs of patients with CKD receiving haemodialysis from the perspectives of patients and their family caregivers., Methods and Analysis: Transcendental phenomenological research design will be used. Participants will be recruited from the dialysis centre of a tertiary hospital through purposive sampling based on specific inclusion criteria. In-depth unstructured interviews, observation and document analysis will be the methods for data collection. Data will be analysed using Colaizzi's approach following the transcription of the interviews., Ethics and Dissemination: The study has been approved by the Institutional Review Board (IRB) of Shifa Tameer-e-Millat University, Pakistan (IRB # 0307-23) and written permission was obtained from the administration of the study hospital. Before giving written and verbal consent, all participants will receive detailed information about the study. Participants will maintain the freedom to withdraw from the study at any point. Confidentiality of the participants will be ensured. The study findings will be disseminated to important stakeholders and published in scientific papers and conference proceedings., 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.)

Patients face numerous health-related decisions once advanced chronic kidney disease (CKD) is diagnosed. Yet, when patients are underprepared to navigate and discuss health-related decisions, they can make choices inconsistent with their expectations for the future. This pilot study, guided by the multiphase optimization strategy and community-engaged research principles, aimed to explore the acceptability of a developed patient component to a decision-support training intervention called ImPart (Improving Decisional Partnership of CKD Dyads). CKD patients and their family caregivers were recruited from an urban, academic medical center. Eligibility criteria for patients included a diagnosis of stage 3 or higher CKD (on chart review), and caregivers participated in interview sessions only. Patients without a caregiver were not eligible. The intervention was lay coach, telephone-delivered, and designed to be administered in 1-2 week intervals for 4 sessions. An interview guide, developed in collaboration with an advisory group, was designed to ascertain participants' experiences with the intervention. Caregiver interviews focused on changes in the patient's decision ability or engagement. Thirteen patients and eleven caregivers were interviewed. The program was viewed as "good" or "beneficial." Three themes capture the intervention's impact- 1) Frequent and deliberate disease-focused communication, 2) Future planning activation, and 3) Coaching relationship. The piloted intervention was successfully delivered, acceptable to use, and found to promote enhanced disease and future planning communication. By undergoing this work, we ensure that the patient component is feasible to use and meets the needs of participants before implementation in a larger factorial trial., Competing Interests: The authors have declared that no competing interests exist., (Copyright: © 2024 Gazaway et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.)

Importance: The pathway to kidney transplantation (KT) begins with the patient's acceptance of this surgical procedure after discussion with the nephrologist. The patients' perceptions of the disease and of KT may influence their willingness to undergo transplantation., Objective: To describe patients' experiences of kidney disease and their perceptions of KT and the nephrologists' perceptions of the patient experience., Design, Setting, and Participants: This qualitative study collected data through semistructured interviews with patients with chronic kidney disease and nephrologists in the Bretagne, Île-de-France and Normandie regions, France. Researchers involved in the study in each region purposely selected 99 patients with chronic kidney disease who initiated dialysis in 2021, based on their age, sex, dialysis facility ownership, and also 45 nephrologists, based on their sex and years of experience. Data analysis was performed from January to October 2023., Main Outcomes and Measures: Themes were identified using inductive thematic analysis. Specific characteristics of men and women as well as the nephrologist's views for each theme were described., Results: This study included 42 men and 57 women (56 [57%] aged 60 years or older) who started dialysis in 2021 and 45 nephrologists (23 women and 22 men). Six major themes were identified: (1) burden of chronic kidney disease on patients and their families, (2) health care professional-patient relationship and other factors that modulate chronic kidney disease acceptance, (3) dialysis perceived as a restrictive treatment, (4) patients' representation of the kidney graft, (5) role of past experiences in KT perception, and (6) dualistic perception of KT. In some cases, women and nephrologists indicated that women's perceptions and experiences were different than men's; for example, the disease's psychological impact and the living donor KT refusal were mainly reported by 8 women., Conclusions and Relevance: Patients' past experience of chronic kidney disease in general and of KT in particular, as well as their relationship with their family and nephrologist, were substantial determinants of KT perception in this qualitative study. Targeted policies on these different factors might help to improve access to KT, and more research is needed to understand whether there are sex-based disparities.