Management of eating disorders for people with higher weight: clinical practice guideline.

Introduction: The prevalence of eating disorders is high in people with higher weight. However, despite this, eating disorders experienced by people with higher weight have been consistently under-recognised and under-treated, and there is little to guide clinicians in the management of eating disorders in this population.

Aim: The aim of this guideline is to synthesise the current best practice approaches to the management of eating disorders in people with higher weight and make evidence-based clinical practice recommendations.

Child and caregiver perspectives on access to psychosocial and educational support in pediatric chronic kidney disease: a focus group study.

Background: Children with chronic kidney disease (CKD) generally have worse educational and psychosocial outcomes compared with their healthy peers. This can impair their ability to manage their treatment, which in turn can have long-term health consequences through to adulthood. We attempted to capture the experiences of children with CKD and to describe the perspectives of their parents and caregivers on access to educational and psychosocial support.

The experiences and impact of being deemed ineligible for living kidney donation: Semi-structured interview study.

Aim: We aimed to describe the impact and experience of being deemed ineligible as a living kidney donor.

Methods: Semi-structured interviews were conducted with 27 ineligible donor candidates. Transcripts were analysed thematically.

Living kidney donor and recipient perspectives on their relationship: longitudinal semi-structured interviews.

Background And Objectives: Many donors and recipients report an improved bond posttransplantation; however, unexpected conflicts and tension may also occur. Insights into the lived experiences of the donor-recipient relationship can inform strategies for interventions and support. We aimed to describe donor and recipient expectations and experiences of their relationship before and after living kidney donor transplantation.

Identifying Important Outcomes for Young People With CKD and Their Caregivers: A Nominal Group Technique Study.

Rationale & Objective: Chronic kidney disease (CKD) has wide-ranging and long-term consequences for young people and their families. The omission of outcomes that are important to young people with CKD and their caregivers limits knowledge to guide shared decision making. We aimed to identify the outcomes that are important to young people with CKD and their caregivers.

Patient-reported outcome measures for life participation in kidney transplantation: A systematic review.

For many patients with end-stage kidney disease, transplantation improves survival and quality of life compared with dialysis. However, complications and side effects in kidney transplant recipients can limit their ability to participate in activities of daily living including work, study, and recreational activities. The aim of this study was to identify the characteristics, content, and psychometric properties of the outcome measures used to assess life participation in kidney transplant recipients.

Research priorities for childhood chronic conditions: a workshop report.

Background: Chronic conditions are the leading cause of mortality, morbidity and disability in children. However, children and caregivers are rarely involved in identifying research priorities, which may limit the value of research in supporting patient-centred practice and policy.

Objective: To identify priorities of patients, caregivers and health professionals for research in childhood chronic conditions and describe the reason for their choices.

Child and Parental Perspectives on Communication and Decision Making in Pediatric CKD: A Focus Group Study.

Background & Objectives: Effective communication and shared decision making improve quality of care and patient outcomes but can be particularly challenging in pediatric chronic disease because children depend on their parents and clinicians to manage complex health care and developmental needs. We aimed to describe the perspectives of children with chronic kidney disease (CKD) and their parents with regard to communication and decision making.

Study Design: Qualitative study.

Identifying Outcomes that Are Important to Living Kidney Donors: A Nominal Group Technique Study.

Background And Objectives: Living kidney donor candidates accept a range of risks and benefits when they decide to proceed with nephrectomy. Informed consent around this decision assumes they receive reliable data about outcomes they regard as critical to their decision making. We identified the outcomes most important to living kidney donors and described the reasons for their choices.

Clinicians' attitudes and approaches to evaluating the potential living kidney donor-recipient relationship: An interview study.

Aim: Careful assessment of the potential donor-recipient relationship is recommended by guidelines to prevent undue coercion, and to ensure realistic expectations and genuine motivations. However, relationships are complex, nuanced and value-laden, and can be challenging to evaluate in living kidney donation. We aimed to describe the attitudes and approaches of transplant clinicians towards assessing the relationship between potential living kidney donors and their recipients.

Patient-Reported Outcome Measures for Fatigue in Patients on Hemodialysis: A Systematic Review.

Background: Fatigue is a prevalent and debilitating symptom in patients receiving hemodialysis. We aimed to identify and evaluate the characteristics and psychometric properties of patient-reported outcome measures for fatigue in patients receiving hemodialysis, to inform the selection of a robust and feasible measure for use in randomized trials in hemodialysis.

Study Design: Systematic review of outcome measures for fatigue.

The Lived Experience of "Being Evaluated" for Organ Donation: Focus Groups with Living Kidney Donors.

Background And Objectives: Comprehensive evaluations are required to safeguard voluntarism and minimize harm to living kidney donors. This process is lengthy, invasive, and emotionally challenging, with up to one fifth of potential donors opting out. We aimed to describe donors' experiences of the evaluation process.

Toward Establishing Core Outcome Domains For Trials in Kidney Transplantation: Report of the Standardized Outcomes in Nephrology-Kidney Transplantation Consensus Workshops.

Background: Treatment decisions in kidney transplantation requires patients and clinicians to weigh the benefits and harms of a broad range of medical and surgical interventions, but the heterogeneity and lack of patient-relevant outcomes across trials in transplantation makes these trade-offs uncertain, thus, the need for a core outcome set that reflects stakeholder priorities.

Methods: We convened 2 international Standardized Outcomes in Nephrology-Kidney Transplantation stakeholder consensus workshops in Boston (17 patients/caregivers; 52 health professionals) and Hong Kong (10 patients/caregivers; 45 health professionals). In facilitated breakout groups, participants discussed the development and implementation of core outcome domains for trials in kidney transplantation.

Expectations and Experiences of Follow-up and Self-Care After Living Kidney Donation: A Focus Group Study.

Background: Ensuring donor wellbeing warrants ongoing monitoring after living kidney donation. However, there is considerable variability in donor follow-up processes, including information provided to donors regarding self-care. Loss to follow-up is common, suggesting that the aims and benefits of monitoring and follow-up may not be apparent.

Healthcare and Research Priorities of Adolescents and Young Adults with Systemic Lupus Erythematosus: A Mixed-methods Study.

Objective: Managing juvenile-onset systemic lupus erythematosus (SLE) is particularly challenging. The disease may be severe, adolescent patients have complex medical and psychosocial needs, and patients must navigate the transition to adult services. To inform patient-centered care, we aimed to identify the healthcare and research priorities of young patients with SLE and describe the reasons underpinning their priorities.

Donor and Recipient Views on Their Relationship in Living Kidney Donation: Thematic Synthesis of Qualitative Studies.

Background: Many donors and recipients report an improved relationship after transplantation; however, tension, neglect, guilt, and proprietorial concern over the recipient can impede donor and recipient well-being and outcomes. We aimed to describe donor and recipient expectations and experiences of their relationship in the context of living kidney donation.

Study Design: Thematic synthesis of qualitative studies.

Attitudes and beliefs about deceased organ donation in the Arabic-speaking community in Australia: a focus group study.

Objectives: To describe the beliefs and attitudes to organ donation in the Arabic-speaking community.

Design: Arabic-speaking participants were purposively recruited to participate in 6 focus groups. Transcripts were analysed thematically.

Lupus Means Sacrifices: Perspectives of Adolescents and Young Adults With Systemic Lupus Erythematosus.

Objective: Disease activity, organ damage, and treatment burden are often substantial in children and adolescents with systemic lupus erythematous (SLE), and the complex interplay among the developing child, parents, and peers makes effective management difficult. We aimed to describe the experiences and perspectives of adolescents and young adults diagnosed with juvenile-onset SLE to inform strategies for improving treatment and health outcomes.

Methods: Focus groups and face-to-face semistructured interviews were conducted with 26 patients ages 14-26 years, from 5 Australian hospitals in 2013-2014.

Community-Based Interventions and Individuals' Willingness to be a Deceased Organ Donor: Systematic Review and Meta-Analysis.

Background: Widespread in-principle community support for organ donation does not necessarily translate to individuals becoming organ donors after death. Previous studies have identified factors that influence individuals' decisions to become organ donors, which may be effectively targeted by interventions. We aimed to describe and evaluate the effectiveness of community-based interventions to increase the willingness of individuals to be a deceased organ donor.

Focus group study of public opinion about paying living kidney donors in Australia.

Background And Objectives: The unmet demand for kidney transplantation has generated intense controversy about introducing incentives for living kidney donors to increase donation rates. Such debates may affect public perception and acceptance of living kidney donation. This study aims to describe the range and depth of public opinion on financial reimbursement, compensation, and incentives for living kidney donors.

The expectations and attitudes of patients with chronic kidney disease toward living kidney donor transplantation: a thematic synthesis of qualitative studies.

Background: Living kidney donation offers superior outcomes over deceased organ donation, but incurs psychosocial and ethical challenges for recipients because of the risks imposed on their donor. We aimed to describe the beliefs, attitudes, and expectations of patients with chronic kidney disease toward receiving a living kidney donor transplant.

Methods: We conducted a systematic review of qualitative studies of patients' attitudes toward living kidney donation using a comprehensive literature search of electronic databases to February 2013.

Women's preferences for selective estrogen reuptake modulators: an investigation using protection motivation theory.

Objective: Selective estrogen receptor modulators (SERMs) reduce breast cancer risk by 38%. However, uptake is low and the reasons are not well understood. This study applied protection motivation theory (PMT) to determine factors associated with intention to take SERMs.

Women's preferences for selective estrogen reuptake modulators: an investigation using the time trade-off technique.

Purpose: Selective Estrogen Receptor Modulators (SERMs) reduce the risk of breast cancer for women at increased risk by 38%. However, uptake is extremely low and the reasons for this are not completely understood. The aims of this study were to utilize time trade-off methods to determine the degree of risk reduction required to make taking SERMs worthwhile to women, and the factors associated with requiring greater risk reduction to take SERMs.