A Core Outcome Set for Trials in CKD: Report of the Standardized Outcomes in Nephrology-Chronic Kidney Disease (SONG-CKD) Stakeholder Workshops.

Omitting outcomes of importance to patients with chronic kidney disease (CKD) and their caregivers from trials can impede decision-making based on patient-centered outcomes. As part of the global Standardized Outcomes in Nephrology - Chronic Kidney Disease (SONG-CKD) initiative, we aimed to establish a consensus-based set of core outcomes for trials in CKD (prior to the need for kidney replacement therapy). To finalize the proposed set of core outcomes that were identified through focus groups and an international Delphi survey, we convened two international stakeholder workshops in English and Spanish languages that involved 61 patients/caregivers and 75 health professionals from 18 countries.

Patient-reported outcome measures for life participation in patients with chronic kidney disease: a systematic review.

Background: The symptoms, comorbidities and treatment burden associated with chronic kidney disease (CKD) can be debilitating and limit life participation in patients with CKD not requiring kidney replacement therapy (KRT). The aim of this study was to identify the characteristics, content and psychometric properties of patient-reported outcome measures (PROMs) used to assess life participation in patients with CKD.

Methods: We searched MEDLINE, Embase, PsycINFO and CINAHL from database inception to February 2023 for all studies that reported life participation in patients with CKD (stages 1-5 not requiring kidney replacement therapy).

Baseline Characteristics of Frailty and Disease Stage in Older People Living With CKD.

Introduction: The GOAL trial, a cluster randomized controlled trial, investigated the effect of comprehensive geriatric assessment (CGA) on frail older people with chronic kidney disease (CKD). This paper describes the following: (i) participant baseline characteristics, and (ii) their relationship with CKD stage and frailty severity.

Methods: Sixteen kidney outpatient clinics (clusters) were randomly allocated 1:1 to CGA or usual care.

EMPOWER PKD: Patient, Caregiver, and Researcher Priorities for Research in Polycystic Kidney Disease.

Background: Patient involvement in research can help to ensure that the evidence generated aligns with their needs and priorities. In the Establishing Meaningful Patient-Centered Outcomes With Relevance for Patients with Polycystic Kidney Disease (EMPOWER PKD) project we aimed to identify patient-important outcomes and discuss the impact of PKD on patients.

Methods: Nine focus groups were held with adult patients with PKD, caregivers, and clinical or research experts in PKD.

Patient, Caregiver, and Provider Perspectives on Improving Provider-Patient Interactions in Hemodialysis: A Qualitative Study.

Background: Improving interactions between people receiving hemodialysis and health care providers of facility-based hemodialysis care is a top priority for patients, caregivers, and health care providers.

Objective: To identify challenges for high-quality clinical interactions in facility-based hemodialysis care as well as potential solutions.

Design: Multicentre qualitative study using focus groups and semi-structured interviews to elicit the perspectives of patients, caregivers, and health care providers.

Sex and gender as predictors for allograft and patient-relevant outcomes after kidney transplantation.

Background: Sex, as a biological construct, and gender, defined as the cultural attitudes and behaviours attributed by society, may be associated with allograft loss, death, cancer, and rejection. Other factors, such as recipient age and donor sex, may modify the association between sex/gender and post-transplant outcomes.

Objectives: We sought to evaluate the prognostic effects of recipient sex and, separately, gender as independent predictors of graft loss, death, cancer, and allograft rejection following kidney or simultaneous pancreas-kidney (SPK) transplantation.

Perspectives on Long-Term Follow-Up among Living Kidney Donors.

Key Points: In a survey of 685 previous living kidney donors, donors wanted lifelong annual follow-up with a primary care provider. Living donors wanted information on clinical and laboratory assessment and health reassurance. Donors also wanted access to specialized care in the event of hospitalization or change in health.

Perspectives of Caregivers on Access to Health Care for Children with CKD.

Introduction: Inequitable access to health care based on demographic factors such as ethnicity, socioeconomic status and geographical location has been consistently found in children with chronic kidney disease (CKD). However, little is known about the perspectives of caregivers on accessing health care. We described caregivers' perspectives on accessing health care for children with CKD from socioeconomically disadvantaged backgrounds and/or rural or remote areas.

Establishing a peritoneal dialysis technique survival core outcome measure: A standardised outcomes in nephrology-peritoneal dialysis consensus workshop report.

Background: Technique survival, also reported with negative connotations as technique failure or transfer from peritoneal dialysis to haemodialysis, has been identified by patients, caregivers and health professionals as a critically important outcome to be reported in all trials. However, there is wide variation in how peritoneal dialysis technique survival is defined, measured and reported, leading to difficulty in comparing or consolidating results.

Methods: We conducted an online international consensus workshop to establish a core outcome measure of technique survival.

Patient and Caregiver Perspectives on Gender Disparity in CKD: An Interview Study.

Background: Chronic kidney disease (CKD) affects more women than men worldwide, however, men comprise the majority of patients who receive kidney replacement therapy. We aimed to describe the perspectives of patients and their caregivers regarding gender disparities in CKD.

Methods: Semi-structured interviews were conducted with 45 patients with CKD (20 women) and 14 caregivers (12 women) from seven clinics in Austria.

Preferences in treating polyomavirus infection in kidney transplant recipients: A discrete choice experiment with patients, caregivers, and clinicians.

Background: Treatment strategies for BK polyomavirus (BKPyV) infection in kidney transplant recipients are heterogeneous among clinicians. We aimed to identify the treatment preferences of key stakeholders for BKPyV infection and measure the trade-offs between treatment outcomes.

Methods: Adult kidney transplant recipients, caregivers, and clinicians were eligible to participate in a discrete choice experiment between February 2021 and June 2022.

Factors informing funding of health services for Aboriginal and Torres Strait Islander children: perspectives of decision-makers.

Background The factors informing decisions to fund health services for Aboriginal and Torres Strait Islander children are unclear. This study's objective aimed to describe decision-makers' perspectives on factors informing decisions to fund health services for Aboriginal and Torres Strait Islander children. Methods We conducted semi-structured interviews with 13 participants experienced in making funding decisions at organisational, state, territory and national levels.

Core Patient-Reported Outcomes for Trials in Nephrology.

The outcomes reported in trials across all stages of chronic kidney disease (CKD) are highly variable and often do not include outcomes that are directly relevant to patients and caregivers. Frequently, the outcomes reported in trials are often unvalidated surrogate biochemical end points. The omission of outcomes that are meaningful and important to patients can diminish the value of trials in supporting treatment decisions.

Experiences of Social Isolation and Loneliness in Chronic Kidney Disease: A Secondary Qualitative Analysis.

Key Points: Loneliness and social isolation are increasingly recognized as global public health issues; however, little is known about the patient and caregiver experience in CKD. We used qualitative data to explore the experiences of loneliness and social isolation from the perspective of patients and caregivers.

Background: Many patients with CKD experience loneliness and social isolation, which are associated with a higher risk of mortality, morbidity, and poor mental health.

Patient, Parental, and Health Professional Perspectives on Growth in Children With CKD.

Rationale & Objective: Growth failure is a common problem among children with chronic kidney disease (CKD). Reduced height is associated with psychosocial burden, social stigma, and impaired quality of life. This study describes the aspects of growth impairment that are most impactful from the perspectives of children with CKD, their parents, and health professionals.

The cultural safety of research reports on primary healthcare use by Indigenous Peoples: a systematic review.

Introduction: Community-driven research in primary healthcare (PHC) may reduce the chronic disease burden in Indigenous peoples. This systematic review assessed the cultural safety of reports of research on PHC use by Indigenous peoples from four countries with similar colonial histories.

Methods: Medline, CINAHL and Embase were all systematically searched from 1st January 2002 to 4th April 2023.

Impact of the COVID-19 pandemic from the perspective of patients with cardiovascular disease in Australia: mixed-methods study.

Objectives: The study explored the perceived impacts of COVID-19 and its associated policies and social restrictions on health, self-management and access to healthcare.

Design: Cross-sectional observational (online survey) and qualitative study (semi-structured interviews and thematic analysis).

Setting: Australia.

Patient Perspectives on Using Telemedicine During In-Center Hemodialysis: A Qualitative Study.

Rationale & Objective: In the wake of the coronavirus disease 2019 (COVID-19) pandemic, the United States federal government expanded originating telemedicine sites to include outpatient dialysis units. For the first time, nephrology practitioners across the United States could replace face-to-face visits with telemedicine for patients receiving in-center hemodialysis. This study describes patients' perspectives on the use of telemedicine during in-center hemodialysis.

Development of the What Matters 2 Adults (WM2A) wellbeing measure for Aboriginal and Torres Strait Islander adults.

Purpose: As wellbeing is culturally bound, wellbeing measures for Aboriginal and Torres Strait Islander peoples must be culturally relevant and grounded in Aboriginal and Torres Strait Islander values and preferences. We describe the development of a nationally-relevant and culturally grounded wellbeing measure for Aboriginal and Torres Strait Islander adults: the What Matters to Adults (WM2A) measure.

Methods: We used a mixed methods approach to measure development, combining Indigenist methodologies and psychometric methods.