Inequities in kidney health and kidney care

Acknowledgements The European Kidney Health Alliance (EKHA) is a not-for-profit organization defending the case of the kidney patients and the nephrological community at the level of the European Commission. The EKHA network has five full members (the European Renal Association, the International Society of Nephrology, the European Kidney Patients Federation, the European Dialysis and Transplant Nurses Association-European Renal Care Association and the Dutch Kidney Foundation) next to 27 National or Regional Societies as affiliated members. European Kidney Health Alliance is the recipient of support by the European Union in the context of the Annual Work Program 2022 on prevention of non communicable diseases of EU4Health, topic ID EU4H-2022-PJ02, project #Peer reviewedPostprin

Establishing a core outcome set for peritoneal dialysis : report of the SONG-PD (standardized outcomes in nephrology-peritoneal dialysis) consensus workshop

Outcomes reported in randomized controlled trials in peritoneal dialysis (PD) are diverse, are measured inconsistently, and may not be important to patients, families, and clinicians. The Standardized Outcomes in Nephrology-Peritoneal Dialysis (SONG-PD) initiative aims to establish a core outcome set for trials in PD based on the shared priorities of all stakeholders. We convened an international SONG-PD stakeholder consensus workshop in May 2018 in Vancouver, Canada. Nineteen patients/caregivers and 51 health professionals attended. Participants discussed core outcome domains and implementation in trials in PD. Four themes relating to the formation of core outcome domains were identified: life participation as a main goal of PD, impact of fatigue, empowerment for preparation and planning, and separation of contributing factors from core factors. Considerations for implementation were identified: standardizing patient-reported outcomes, requiring a validated and feasible measure, simplicity of binary outcomes, responsiveness to interventions, and using positive terminology. All stakeholders supported inclusion of PD-related infection, cardiovascular disease, mortality, technique survival, and life participation as the core outcome domains for PD

Improving access to kidney replacement therapy for rural Australians with chronic kidney disease

People with chronic kidney disease (CKD) living in rural communities have a higher risk of mortality, morbidity, hospitalisation, and decreased quality of life. They are less likely to access nephrology services and receive the recommended testing and education about CKD. Many barriers to accessing healthcare exist for rural patients with CKD, including geography and travel, particularly in large countries like Australia. This thesis aims to summarise existing evidence, generate new and comprehensive knowledge about the experiences, perspectives and needs of rural patients in accessing kidney replacement therapy in Australia, and to develop a practical, evidence-based, consumer-driven framework for improving access to healthcare for rural people with CKD. Chapter 2 provides synthesised evidence from multiple qualitative studies on patients’ and caregivers perspectives on access to kidney replacement therapy to generate comprehensive insights across rurally diverse geographical settings and populations. Chapters 3 to 5 is a suite of qualitative studies that describe in-depth perspectives of rural patients, caregivers, and clinicians on access to dialysis and transplant. Chapter 6 is a survey of the financial impact of CKD on families in rural Australia. Chapter 7 describes a series of workshops conducted with patients, caregivers, and health professionals on identifying roles and priorities of a rural patient navigator program for patients with CKD in rural settings. In conclusion, this thesis identifies a plethora of barriers and challenges in accessing dialysis and transplantation for rural people with CKD in Australia. The findings highlight the need for education, particularly regarding treatment options, financial support, psychosocial services, and support in navigating complex healthcare services

Patient and caregiver perspectives on sleep in dialysis

Sleep disturbances are common among patients receiving dialysis and are associated with an increased risk of mortality and morbidity, and impaired quality of life. Despite being highly prioritised by patients, sleep problems remain under-diagnosed and inadequately managed. The aim of the present study was to describe the perspectives of patients receiving dialysis and their caregivers on sleep. We extracted qualitative data on sleep from 26 focus groups, two international Delphi surveys, and two consensus workshops involving 644 patients and caregivers from 86 countries as part of the Standardised Outcomes in Nephrology-Haemodialysis and -Peritoneal Dialysis (SONG-HD/SONG-PD) initiatives. The responses were from patients aged ≥18\ua0years receiving haemodialysis or peritoneal dialysis, and their caregivers. We analysed the data using thematic analysis with five themes identified: constraining daily living (with subthemes of: battling intrusive tiredness, exacerbating debilitating conditions, broken and incapacitated); roadblocks in relationships (unable to meet family needs, antipathy due to misunderstanding, wreaking emotional havoc); burden on caregivers (stress on support persons, remaining alert to help); losing enjoyment (limiting social contact, disempowerment in life); and undermining mental resilience (aggravating low mood, diminishing coping skills, reducing functional ability). Sleep disturbances are exhausting for patients on dialysis and pervade all aspects of their lives including the ability to do daily tasks, and maintaining relationships, mental and emotional well-being. Better assessment and management of sleep problems in dialysis is needed, which may lead to improvements in overall health and quality of life

Nutrition Education Models for Patients With Chronic Kidney Disease

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

[In Press] Indigenous Peoples' perspectives of living with chronic kidney disease: systematic review of qualitative studies

Marianne Kerr, Nicole Evangelidis, Penelope Abbott, Jonathan C. Craig, Michelle Dickson, Nicole Scholes-Robertson, Victoria Sinka, Rahim T. Vastani, Katherine Widders, Jacqueline H. Stephens, and Allison Jaur

The Impact of the COVID-19 Pandemic on Patients With CKD: Systematic Review of Qualitative Studies

Rationale & Objective: COVID-19 disproportionately affects people with co-morbidities, including chronic kidney disease (CKD). The aim of this study was to describe the impact of COVID-19 on people with CKD and their caregivers. Study Design: A systematic review of qualitative studies. Setting & Study Populations: Primary studies that reported the experiences and perspectives of adults with CKD and/or caregivers were eligible. Search Strategy & Sources: MEDLINE, Embase, PsycINFO, CINAHL were searched from database inception to October 2022. Data Extraction: Two authors independently screened the search results. Full texts of potentially relevant studies were assessed for eligibility. Any discrepancies were resolved by discussion with another author. Analytical Approach: A thematic synthesis was used to analyze the data. Results: Thirty-four studies involving 1962 participants were included. Four themes were identified: exacerbating vulnerability and distress (looming threat of COVID-19 infection, intensifying isolation, aggravating pressure on families); uncertainty in accessing health care (overwhelmed by disruption of care, confused by lack of reliable information, challenged by adapting to telehealth, skeptical about vaccine efficacy and safety); coping with self-management (waning fitness due to decreasing physical activity, diminishing ability to manage diet, difficulty managing fluid restrictions, minimized burden with telehealth, motivating confidence and autonomy); and strengthening sense of safety and support (protection from lockdown restrictions, increasing trust in care, strengthened family connection). Limitations: Non-English studies were excluded and the inability to delineate themes based on stage of kidney and treatment modality. Conclusions: Uncertainty in accessing health care during the COVID-19 pandemic exacerbated vulnerability, emotional distress, and burden, and led to reduced capacity to self-manage among patients with CKD and their caregivers. Optimizing telehealth and access to educational and psychosocial support may improve self-management, and the quality and effectiveness of care during a pandemic, mitigating potentially catastrophic consequences in people with CKD. Registration: Study not registered

Perspectives on blood pressure by patients on haemo- and peritoneal dialysis

Aim: The management of blood pressure in patients requiring dialysis remains challenging and controversial. This study aimed to describe the perspectives of patients treated with peritoneal or haemodialysis regarding blood pressure, to inform patient-centred management. Methods: We conducted a secondary thematic analysis of qualitative data from multiple data sets derived from the Standardised Outcomes in Nephrology (SONG) initiative. We extracted and analysed the responses of adult patients (aged 18 years or over) on haemodialysis and peritoneal dialysis, and their caregivers. Qualitative data were extracted from 26 focus groups, two international Delphi surveys and two consensus workshops completed as part of the SONG-Haemodialysis and SONG-Peritoneal dialysis projects. Results: Collectively, the studies involved 644 patients and caregivers from 86 countries. We identified four themes: helpless and incapacitated (including the subthemes of disabling and debilitating symptoms, limiting ability to work, fear of “crashes” – a sudden drop in blood pressure – forced to depend on others); dismissed and ignored (disregarded as a problem, lacking information, education and reassurance); escalating medication burden; and taking control for improved self-management (determining thresholds in fluid management, establishing a routine for proactive monitoring). Conclusion: Blood pressure symptoms are debilitating for patients on dialysis and exacerbated by a perceived lack of information about how to understand and manage these symptoms. More patient-centred management of blood pressure, particularly symptom-causing blood pressure, in patients on dialysis is likely to substantially improve patient satisfaction and outcomes

糖尿病患者接受连续血糖监测和传感器增强胰岛素泵治疗的体验:对定性研究的系统综述

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