Patient Needs and Priorities for a Goal-Setting Intervention in Kidney Transplant Recipients: A Workshop Report.

Aim: Kidney transplant recipients have an increased risk of side effects and complications and must adhere to a complex treatment regimen. Goal-setting interventions have the potential for improving behavioural, health and quality of life outcomes. The aim of the workshop was to identify the priorities of kidney transplant recipients regarding goal-setting domains, and to describe their perspectives on the design and implementation of goal-setting interventions.

Experiences and perspectives of patients and their caregivers on gastrointestinal symptoms in peritoneal dialysis: Workshop report.

IntroductionGastrointestinal (GI) symptoms are common and can be debilitating for patients receiving peritoneal dialysis (PD). However, they are rarely reported and there is no widely accepted or validated tool for measuring GI health in these patients to facilitate shared decision making.MethodsAn online consensus workshop was conducted to describe the experiences and perspectives about the impacts of GI symptoms in patients receiving PD and their caregivers and suggestions for measuring GI symptoms in clinical practice and research.

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

Objective: Fatigue is a common and debilitating symptom that is associated with an increased risk of mortality, dialysis initiation and hospitalisation among patients with chronic kidney disease (CKD). The aim of this study was to identify the characteristics, content and psychometric properties of patient-reported outcome measures (PROMs) used to measure fatigue in patients with CKD not requiring kidney replacement therapy (KRT).

Design: Systematic review.

Nephrology Health Professionals' Perspectives on Their Preferred Modality for Scientific Meetings, Balancing Affordability, Sustainability and Opportunities to Interact With Peers: An International Society of Nephrology Survey.

Introduction: The COVID-19 lockdowns and awareness of the ecological impact of our profession led us to reconsider the way we deliver scientific meetings. In this International Society of Nephrology (ISN) survey, we aimed to investigate health professionals' preferences for in-person, virtual or hybrid nephrology meetings.

Methods: An questionnaire was developed within the ISN Western Europe Regional Board; a pilot survey checked for clarity and consistency (204 professionals).

Systematic Review of Patient and Caregiver Involvement in CKD Research.

Introduction: Limited consumer involvement in chronic kidney disease (CKD) research may reduce its relevance, impact, and transferability into practice and policy. We aimed to describe the current landscape of consumer (patients with CKD and caregivers) involvement in published CKD research.

Methods: Electronic databases were searched to August 2023.

Policy innovations to advance equity in solid organ transplantation.

Advances in solid organ transplantation, such as improved organ preservation technologies and novel approaches to immunosuppression management, have the potential to improve outcomes in transplant recipients. However, despite these developments, there are persistent disparities in access to transplantation across, and within, certain countries. Low-income and middle-income countries have particularly low rates of transplantation, as well as less access to new technologies, mainly due to limited infrastructure and resources.

The Perspectives of Young Indigenous People on Chronic Disease Prevention Programs: A Systematic Review of Qualitative Studies.

This review explores the perspectives of Indigenous young people aged 10 to 24 on programs aimed at preventing chronic diseases, which are prevalent among Indigenous populations and tend to increase with age. This study synthesizes findings from 13 qualitative studies conducted across Canada, Australia, New Zealand, and the United States, involving 441 participants. The analysis identified four key themes.

Identifying and integrating consumer-prioritised topics and outcomes in clinical practice guidelines on managing kidney stones.

Aim: The prevention and management of recurrent kidney stones can be challenging and requires patients to modify their diet and daily rountines that impact their quality of life. Our study aims to describe the process of integrating consumer-prioritised topics and outcomes in guidelines on kidney stones to ensure patient relevance.

Methods: Two workshops were convened in Aotearoa New Zealand with people with kidney stones invited to identify topics and outcomes for inclusion in the guidelines.

Core Outcome Measure for Life Participation in Patients with CKD: Standardized Outcomes in Nephrology Workshops Report.

Key Points: Patients, caregivers, and health professionals support the use of standardised outcomes in nephrology - life participation as the core outcome measure for life participation in patients with CKD. Further work is needed to pilot and validate the standardised outcomes in nephrology - life participation measure in patients with CKD before the need for KRT. A core outcome measure will support consistent reporting of life participation in trials in patients with CKD.

Patients' Perspectives on Living With Primary Membranous Nephropathy: A Semi-Structured Interview Study.

Rationale & Objective: Membranous nephropathy (MN) is characterized by a relapsing remitting course with a third of patients developing kidney failure if untreated. Little is known about the experiences patients have when living with MN. This study described those experiences to inform choices of clinical care and guide future research.

Patient and Caregiver Involvement in Identifying and Designing Interventions for Trials in Chronic Kidney Disease: A Scoping Review.

Background: Patient and caregiver involvement in identifying and designing health interventions can enhance the acceptability and uptake of interventions for person-centered care and outcomes. Our aim was to describe the approaches used to involve patients and caregivers in the identification and design of interventions in chronic kidney disease (CKD).

Methods: Electronic databases were searched to April 2024 for articles that described the involvement of patients and caregivers in the identification and design of interventions for research in CKD.

Experiential Evidence of Systemic Racism for Indigenous Peoples Navigating Transplantation in Canada.

Introduction: Despite previous data stating that Indigenous patients with kidney failure are 66% less likely to receive a kidney transplant compared with White Canadians, there is a very limited understanding of the barriers and challenges experienced and described by Indigenous Peoples when accessing kidney transplantation. The aim of this study was to describe the perspectives and experiences of Indigenous kidney transplant candidates and recipients, living kidney donors, and Elders on access to kidney transplantation in British Columbia, Canada in the hopes of codeveloping and implementing health services interventions to address systemic barriers to transplantation.

Methods: Semistructured interviews were conducted with 19 participants and 4 focus groups were conducted with 18 participants ( = 37).

Stakeholder perspectives on HPV vaccination uptake among Aboriginal and Torres Strait Islander adolescents via the school immunisation programmes in Queensland: a qualitative study.

Introduction: Aboriginal and Torres Strait Islander women experience inequitable cervical cancer outcomes including higher incidence and mortality rates than other Australian women. Cervical cancer can be prevented through human papillomavirus (HPV) vaccination, which is primarily delivered through school immunisation programmes and found to be very effective. However, Aboriginal and Torres Strait Islander adolescents have lower rates of HPV vaccination uptake compared with non-Indigenous adolescents.

Incremental compared with full-dose peritoneal dialysis: A cost analysis from a third-party payer perspective in Australia.

IntroductionIncremental peritoneal dialysis (PD) prescriptions, tailored to individual patient needs and residual kidney function, may offer patients greater dialysis-free time than full-dose PD and has the potential to yield substantial cost savings. We aimed to quantify the direct healthcare costs and resource utilization associated with incremental and full-dose PD from a third-party health service payer's perspective and estimate dialysis-free time and dialysis waste saved.MethodsWe recruited patients from a large dialysis service provider in Australia.

An evaluation of Human Papillomavirus vaccination resources available to Aboriginal and Torres Strait Islander adolescents and parents and caregivers in Australia.

Objectives: This study aimed to assess the availability, understandability, actionability, readability and cultural relevance of HPV vaccination resources available online for Aboriginal and Torres Strait Islander adolescents and parents/caregivers.

Methods: HPV vaccination resources were collected via Google and website searches. Resources were assessed for readability, understandability, actionability, and cultural relevance.

Patient Perspectives and Experiences With Medication for Gout: A Thematic Synthesis of Qualitative Studies.

Objective: We aimed to describe patients' perspectives and experiences of gout medications to inform patient-centered practice.

Method: We performed a systematic review (using MEDLINE, Embase, PsychINFO, and CINAHL databases) and thematic analysis of studies using qualitative methodology from database inception up to May 2023.

Results: Five dominant themes were identified in 45 studies involving 1203 patients: denying illness, negotiating uncertainty, juggling competing priorities, minimizing symptoms and lifestyle restrictions, and developing strategies and empowerment.

Patient and caregiver perspectives on mental health in children and adolescents with chronic kidney disease.

Rationale & Objective: Children and adolescents with chronic kidney disease (CKD) are at risk of depression and other mental health conditions, which can impair quality of life, the capacity for self-management and adherence to treatment, and overall health. This study aimed to describe the perspectives of patients and caregivers on mental health in children and adolescents across all stages of CKD.

Study Design: Qualitative study.

Reporting the involvement of patients and caregivers in identifying and designing healthcare interventions: the IDEAS framework.

Background And Objective: Patient and caregiver involvement can optimize the relevance and uptake of research. However, there is little guidance on approaches for reporting the involvement of patients and caregivers in the identification and design of health care interventions. This study aims to develop a reporting framework for involving patients and caregivers in identifying and designing health care interventions to improve transparency in the approaches used.

Perspectives on social health among patients from Arab backgrounds receiving kidney replacement therapy: an interview study.

Background: Patients with chronic kidney disease receiving kidney replacement therapy have an increased risk of having poor social participation and connections, which are associated with poor health outcomes. This may be exacerbated in people from minority or disadvantaged groups, including culturally and linguistically diverse populations, who face multiple social disadvantages. We aimed to describe the perspectives on social health and connections among patients from Arab backgrounds receiving kidney replacement therapy.

Interventions to Improve Life Participation in Kidney Transplant Recipients: A Systematic Review.

Rationale & Objective: Life participation, defined as the ability to participate in meaningful activities of daily living, is a critically important outcome for kidney transplant recipients. We aimed to evaluate the effectiveness of any interventions on life participation in kidney transplant recipients.

Study Design: A systematic review of randomized controlled studies.

Perspectives and experiences of parents of children with juvenile dermatomyositis: a semi-structured interview study.

Background: Juvenile Dermatomyositis (JDM) is a rare, childhood inflammatory disease and its management can be challenging and confronting for both clinicians and caregivers. Little is known about the perspectives of parental caregivers of children with JDM. This study aimed to describe the experiences of parents of children with JDM to inform person-centred care.