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

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

Background and Objectives: Although patient and caregiver involvement in research is widely advocated to improve the relevance and uptake of study findings, barriers and uncertainties in achieving this goal remain. This study aimed to describe patient and caregiver experiences and perspectives of their previous involvement in research, to inform strategies to strengthen patient involvement in research., Design, Setting, Participants, & Measurements: Semistructured interviews were conducted with 23 adult patients with CKD and caregivers who had previously been involved in research, from Australia, the United States, the United Kingdom, and Denmark. Transcripts were analyzed thematically., Results: We identified six themes: grappling with CKD diagnosis (overwhelmed by the burden of illness, silenced by stigma and shame, absence of advocacy, and awareness), bearing the responsibility for involvement (autonomy in their own care, forced to be proactive to access opportunities, infrastructural support to connect researchers and patients), battling big agendas (struggling in a system of disincentive, changing research culture, becoming equals), seeing the person behind the patient (harnessing broader knowledge, expertise, skills and interests, understanding patient needs, motivations for involvement), sensitivity to complexities of payment (accounting for individual circumstances, denoting value, enabling diverse involvement), and championing the patient voice (links to important stakeholders, drivers of innovation, responsibility to end users)., Conclusions: The burden of CKD, limited opportunities, and power asymmetry between patients/caregivers and researchers were challenges to meaningful involvement in research. Building trust, awareness of opportunities, and recognizing the broad expertise and value of patients/caregivers, including and beyond their illness experience, may better support patient and caregiver involvement in research in CKD., (Copyright © 2022 by the American Society of Nephrology.)

Background and Objectives: Outcomes reported in trials in adults with glomerular disease are often selected with minimal patient input, are heterogeneous, and may not be relevant for clinical decision making. The Standardized Outcomes in Nephrology-Glomerular Disease (SONG-GD) initiative aimed to establish a core outcome set to help ensure that outcomes of critical importance to patients, care partners, and clinicians are consistently reported., Design, Setting, Participants, and Measurements: We convened two 1.5-hour workshops in Melbourne, Australia, and Washington, DC, United States. Attendees were identified purposively with 50 patients/care partners and 88 health professionals from 19 countries; 51% were female. Patients and care partners were from the United States, Australia, and Canada, and had experience of a glomerular disease with systemic features ( n =9), kidney-limited nephrotic disease ( n =9), or other kidney-limited glomerular disease ( n =8). Attendees reviewed the results of the SONG-GD Delphi survey and aims of the workshop and then discussed potential core outcomes and their implementation in trials among moderated breakout groups of eight to 12 people from diverse backgrounds. Transcripts of discussions were analyzed thematically., Results: Three themes were identified that supported the proposed core outcomes: limiting disease progression, stability and control, and ensuring universal relevance ( i.e. , applicable across diverse populations and settings). The fourth theme, preparedness for implementation, included engaging with funders and regulators, establishing reliable and validated measures, and leveraging existing endorsements for patient-reported outcomes., Conclusions: Workshop themes demonstrated support for kidney function, disease activity, death, life participation, and cardiovascular disease, and these were established as the core outcomes for trials in adults with glomerular disease. Future work is needed to establish the core measures for each domain, with funders and regulators central to the uptake of the core outcome set in trials., (Copyright © 2022 by the American Society of Nephrology.)

Background and Objectives: The language used to communicate important aspects of kidney health is inconsistent and may be conceptualized differently by patients and health professionals. These problems may impair the quality of communication, care, and patient outcomes. We aimed to describe the perspectives of patients on terms used to describe kidney health., Design, Setting, Participants, & Measurements: Patients with CKD ( n =54) and caregivers ( n =13) from the United States, United Kingdom, and Australia participated in ten focus groups to discuss terms for kidney health (including kidney, renal, CKD, ESKD, kidney failure, and descriptors for kidney function). We analyzed the data using thematic analysis., Results: We identified four themes: provoking and exacerbating undue trauma (fear of the unknown, denoting impending death, despair in having incurable or untreatable disease, premature labeling and assumptions, judgment, stigma, and failure of self); frustrated by ambiguity (confused by medicalized language, lacking personal relevance, baffled by imprecision in meaning, and/or opposed to obsolete terms); making sense of the prognostic enigma (conceptualizing level of kidney function, correlating with symptoms and effect on life, predicting progression, and need for intervention); and mobilizing self-management (confronting reality, enabling planning and preparation, taking ownership for change, learning medical terms for self-advocacy, and educating others)., Conclusions: The obscurity and imprecision of terms in CKD can be unduly distressing and traumatizing for patients, which can impair decision making and self-management. Consistent and meaningful patient-centered terminology may improve patient autonomy, satisfaction, and outcomes., (Copyright © 2020 by the American Society of Nephrology.)

Background and Objectives: Shared decision making in patients with glomerular disease remains challenging because outcomes important to patients remain largely unknown. We aimed to identify and prioritize outcomes important to patients and caregivers and to describe reasons for their choices., Design: , setting, participants, & measurements We purposively sampled adult patients with glomerular disease and their caregivers from Australia, Hong Kong, the United Kingdom, and the United States. Participants identified, discussed, and ranked outcomes in focus groups using the nominal group technique; a relative importance score (between zero and one) was calculated. Qualitative data were analyzed thematically., Results: Across 16 focus groups, 134 participants (range, 19-85 years old; 51% women), including 101 patients and 33 caregivers, identified 58 outcomes. The ten highest-ranked outcomes were kidney function (importance score of 0.42), mortality (0.29), need for dialysis or transplant (0.22), life participation (0.18), fatigue (0.17), anxiety (0.13), family impact (0.12), infection and immunity (0.12), ability to work (0.11), and BP (0.11). Three themes explained the reasons for these rankings: constraining day-to-day experience, impaired agency and control over health, and threats to future health and family., Conclusions: Patients with glomerular disease and their caregivers highly prioritize kidney health and survival, but they also prioritize life participation, fatigue, anxiety, and family impact., (Copyright © 2020 by the American Society of Nephrology.)