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

Background: School attendance and life participation, particularly sport, is a high priority for children with chronic kidney disease (CKD). This study is aimed at assessing the association between CKD stage, sports participation, and school absences in children with CKD. Methods: Using data from the binational Kids with CKD study (ages 6–18 years, n = 377), we performed multivariable regression to evaluate the association between CKD stage, school absences, and sports participation. Results: Overall, 62% of participants played sport with the most frequent sport activities engaged in being swimming (17%) and soccer (17%). Compared to children with CKD 1–2, the incidence rate ratios (IRR) (95% CI) for sports participation amongst children with CKD 3–5, dialysis, or transplant were 0.84 (0.64–1.09), 0.59 (0.39–0.90), and 0.75 (0.58–0.96), respectively. The median (IQR) days of school absences within a four-week period were 1 day (0–1), with children on dialysis reporting the highest number of school absences (9 days (5–15)), followed by transplant recipients (2 days (1–7)), children with CKD 3–5 (1 day (0–3)), and with CKD 1–2 (1 day (0–3)). Duration of CKD modified the association between CKD stage and school absences, with children with a transplant experiencing a higher number of missed school days with increasing duration of CKD, but not in children with CKD 1–5 or on dialysis (p-interaction < 0.01). Conclusions: Children receiving dialysis and with a kidney transplant had greater school absences and played fewer sports compared to children with CKD stages 1–2. Innovative strategies to improve school attendance and sport participation are needed to improve life participation of children with CKD. [ABSTRACT FROM AUTHOR]

Patient and caregiver involvement broadens the scope of new knowledge generated from research and can enhance the relevance, quality and impact of research on clinical practice and health outcomes. Incorporating the perspectives of people with lived experience of chronic kidney disease (CKD) affords new insights into the design of interventions, study methodology, data analysis and implementation and has value for patients, healthcare professionals and researchers alike. However, patient involvement in CKD research has been limited and data on which to inform best practice is scarce. A number of frameworks have been developed for involving patients and caregivers in research in CKD and in health research more broadly. These frameworks provide an overall conceptual structure to guide the planning and implementation of research partnerships and describe values that are essential and strategies considered best practice when working with diverse stakeholder groups. This article aims to provide a summary of the strategies most widely used to support multistakeholder partnerships, the different ways patients and caregivers can be involved in research and the methods used to amalgamate diverse and at times conflicting points of view. [ABSTRACT FROM AUTHOR]

Background: Children with chronic kidney disease (CKD) require multidisciplinary care to meet their complex healthcare needs. Patient navigators are trained non-medical personnel who assist patients and caregivers to overcome barriers to accessing health services through care coordination. This trial aims to determine the effectiveness of a patient navigator program in children with CKD. Methods: The NAVKIDS2 trial is a multi-center, waitlisted, randomized controlled trial of patient navigators in children with CKD conducted at five sites across Australia. Children (0–16 years) with CKD from low socioeconomic status rural or remote areas were randomized to an intervention group or a waitlisted control group (to receive intervention after 6 months). The study primary and secondary endpoints include the self-rated health (SRH) (primary), and utility-based quality of life, progression of kidney dysfunction of the child, SRH, and satisfaction with healthcare of the caregiver at 6 months post-randomization. Results: The trial completed recruitment in October 2021 with expected completion of follow-up by October 2022. There were 162 patients enrolled with 80 and 82 patients randomized to the immediate intervention and waitlisted groups, respectively. Fifty-eight (36%) participants were from regional/remote areas, with a median (IQR) age of 9.5 (5.0, 13.0) years, 46% were of European Australian ethnicity, and 65% were male. A total of 109 children (67%) had CKD stages 1–5, 42 (26%) were transplant recipients, and 11 (7%) were receiving dialysis. Conclusion: The NAVKIDS2 trial is designed to evaluate the effectiveness of patient navigation in children with CKD from families experiencing socioeconomic disadvantage. [ABSTRACT FROM AUTHOR]

Background More than 50% of children with chronic kidney disease (CKD) have uncontrolled hypertension, increasing their long-term risk of cardiovascular disease and progression to kidney failure. Children receiving medications or dialysis may also experience acute blood pressure fluctuations accompanied by debilitating symptoms. We aimed to describe the perspectives of children with CKD and their parental caregivers on blood pressure to inform patient-centered care. Methods Secondary thematic analysis was conducted on qualitative data from the Standardized Outcomes in Nephrology—Children and Adolescents initiative, encompassing 16 focus groups, an international Delphi survey and two consensus workshops. We analyzed responses from children with CKD (ages 8–21 years) and caregivers (of children ages 0–21 years) pertaining to blood pressure. Results Overall, 120 patients and 250 caregivers from 22 countries participated. We identified five themes: invisibility and normalization (reassured by apparent normotension, absence of symptoms and expected links with CKD), confused by ambiguity (hypertension indistinguishable from cardiovascular disease, questioning the need for prophylactic intervention, frustrated by inconsistent messages and struggling with technical skills in measurement), enabling monitoring and maintaining health (gaging well-being and preventing vascular complications), debilitating and constraining daily living (provoking anxiety and agitation, helpless and powerless and limiting life activities) and burden of medications (overwhelmed by the quantity of tablets and distress from unexpected side effects). Conclusions For children with CKD and their caregivers, blood pressure was an important heath indicator, but uncertainty around its implications and treatment hampered management. Providing educational resources to track blood pressure and minimizing symptoms and treatment burden may improve outcomes in children with CKD. [ABSTRACT FROM AUTHOR]

Chronic kidney disease is associated with an increased risk of mortality, comorbidities and life‐threatening complications. Invasive treatments including dialysis or transplantation, complex pharmacological therapies, dietary restrictions and the ongoing need to attend follow‐up appointments can place a substantial treatment burden on patients and carers and impair quality of life. This highlights the need for care that is responsive to the needs of patients and involves them in decision‐making to achieve the most appropriate healthcare outcomes. Shared decision‐making and collaborative approaches to care require a deep awareness of the lived experiences and goals of patients. Qualitative research methods can provide insights into patients' experiences, values and priorities and inform practice and policy by uncovering their preferences for care. Qualitative methods are increasingly being used in standalone projects or in mixed methods studies (complementing quantitative studies) to make valuable contributions to patient‐centred research. Patient‐centred care, collaborations between patient and care provider, and shared decision‐making that integrates with the patient's goals are central to quality healthcare. The efficacy of qualitative research lies in its ability to elicit patients' perspectives, values, priorities and goals that underpin shared decision making and care. This article discusses examples of how qualitative research has informed practice and policy in nephrology, provides a summary of qualitative research methods and outlines a guide on how to appraise, interpret and apply qualitative data. SUMMARY AT A GLANCE: This invited review article discusses examples of how qualitative research has informed practice and policy in nephrology, provides a summary of qualitative research methods and outlines a guide on how to appraise, interpret and apply qualitative data in research. [ABSTRACT FROM AUTHOR]

Abstract: Pain is a severe and common symptom in patients receiving dialysis but remains inadequately managed in clinical practice. Understanding patient experiences of pain can inform strategies to address this patient-important symptom. We aimed to describe patients' perspectives on causes, experiences, and impacts of dialysis-associated pain. MEDLINE, Embase, PsycINFO, and CINAHL were searched to August 2019 for all qualitative studies that described the perspectives of pain in adults aged 18 years or older receiving dialysis. Findings from the primary studies were analyzed using thematic synthesis. We included 60 studies across 14 countries involving 1343 participants (1215 receiving hemodialysis and 128 receiving peritoneal dialysis), and identified 6 themes: gripped by an all-consuming agony (draining cognitive capacity, exacerbating other symptoms); suffering in silence (surrendering to the inevitable, ignored or dismissed, hiding symptoms to protect others); provoking fear of treatment (resistance to cannulation, avoiding dialysis, anxious from witnessing other patients in pain); preventing life participation (preventing fulfilment of valued roles, depleting the will to live); coping aided by connection with others (shared understanding among patients, comforted and supported by others); and developing awareness, assertiveness, and self-reliance (procedural vigilance, finding strategies to minimize pain, bodily understanding and knowing thresholds, positive thinking). Struggling with pain in dialysis involved a progression of agony, fear, avoidance, and despair. However, support from others and self-management strategies were used to cope with pain. Strategies to empower patients to report and minimize pain and its consequences in dialysis are needed. [ABSTRACT FROM AUTHOR]