Allison Jaure

• MM, MPH (Hons), PhD
• Professor at The University of Sydney

Qualitative studies remain relatively uncommon in the transplant literature but are an important approach contributing unique strengths in some areas of research. With the increased focus on patient-centered research and decision-making, it is timely to review qualitative research in the context of transplantation. While quantitative research addre...

Background The syntheses of multiple qualitative studies can pull together data across different contexts, generate new theoretical or conceptual models, identify research gaps, and provide evidence for the development, implementation and evaluation of health interventions. This study aims to develop a framework for reporting the synthesis of quali...

To synthesise the views of patients and carers in decision making regarding treatment for chronic kidney disease, and to determine which factors influence those decisions. Systematic review of qualitative studies of decision making and choice for dialysis, transplantation, or palliative care, and thematic synthesis of qualitative studies. Medline,...

Objectives To evaluate the effect of a coaching intervention compared with control on physical activity and falls rate at 12 months in community-dwelling people aged 60+ years. Design Cluster randomised controlled trial. Setting Community-dwelling older people. Participants 72 clusters (605 participants): 37 clusters (290 participants) randomise...

Aim: Chronic kidney disease (CKD) and its treatment places a financial burden on healthcare systems and households worldwide, yet little is known of its financial impact, on those who reside in rural settings. We aimed to quantify the financial impacts and out-of-pocket expenditure experienced by adult rural patients with CKD in Australia. Method...

Introduction: eHealth supports the delivery of relevant health information and management of chronic disease. However, little is known about patients' perspectives and the determinants of eHealth use among kidney transplant recipients. Methods: Kidney transplant recipients aged 18 years and older from 3 transplant units in Australia and the Bett...

Unlabelled: Cardiovascular disease is a major cause of morbidity and mortality in kidney transplant recipients. Trial evidence to improve cardiovascular outcomes is limited by inconsistent reporting of outcomes, which may also lack patient-relevance. This study aimed to assess the range and consistency of cardiovascular outcomes reported by contem...

The acceptability and impact of eHealth on patient outcomes may be limited if their concerns and priorities are not addressed. This study aimed to describe the perspectives and experiences of eHealth among kidney transplant recipients. Methods: Face-to-face semistructured interviews were conducted with 30 adult kidney transplant recipients from N...

Background Cancer is an important outcome in kidney transplantation, but the scope and consistency of how cancer is defined and reported in trials involving kidney transplant recipients has not been evaluated. This study aimed to assess the range and variability of cancer outcomes in trials involving kidney transplant recipients. Methods The Clini...

Background Burnout among clinicians is common and can undermine quality of care, patient outcomes, and workforce preservation, but sources of burnout or protective factors unique to clinicians working in safety-net settings are less well understood. Understanding these clinician experiences may inform interventions to reduce burnout.Objective To de...

In hemodialysis, fatigue has been identified by patients, caregivers, and health professionals as the most important patient‐reported outcome to report in trials. Psychosocial factors such as mood disorders and social support are also associated with fatigue. Peripheral or physical fatigue refers to the inability to exert or sustain muscle force. F...

Involving consumers (defined as patients and informal caregivers/family members) in research as more than ‘subjects’ is now globally advocated to improve the relevance, importance and quality of research. Growing evidence in the general population and some specific disease groups continue to demonstrate the benefits of consumer involvement in resea...

Objectives: As part of a randomised controlled trial, this qualitative study aimed to identify experiences and challenges of hospitalised patients with COVID-19 during illness and treatment (objective 1: COVID-19-related perspectives; objective 2: trial participation-related perspectives). Design: Semistructured interviews following a prespecifi...

In this multi-center longitudinal cohort study conducted in Australia and New Zealand, we assessed the trajectories of health-related quality of life (HRQoL) in children with chronic kidney disease (CKD) over time. A total of 377 children (aged 6-18 years) with CKD stages 1-5 (pre-dialysis), dialysis, or transplant, were followed biennially for fou...

Background This update summarises key changes made to the protocol since the publication of the original protocol for the NAVKIDS² trial of patient navigators for children with chronic kidney disease (CKD) experiencing social disadvantage and provides the statistical analysis plan (SAP) which has not previously been published. Methods/design The o...

Introduction: Pulmonary exacerbations are associated with increased morbidity and mortality in people with cystic fibrosis (CF). There is no consensus about which outcomes should be evaluated in studies of pulmonary exacerbations or how these outcomes should be measured. Outcomes of importance to people with lived experience of the disease are fre...

Aims: People who live in rural areas have reduced access to appropriate and timely healthcare, leading to poorer health outcomes than their metropolitan-based counterparts. The aims of the workshops were to ascertain participants perspectives on barriers to access to dialysis and transplantation, to identify and prioritize the roles of a rural pat...

Introduction La maladie rénale chronique (MRC) est un problème de santé publique étudié dans nombre d’essais contrôlés randomisés (ECR). Afin d’améliorer sa prise en charge, il est indispensable d’utiliser des critères de jugement (CDJ) homogènes et pertinents pour tous. Description Notre travail s’inscrit dans l’initiative SONG dont l’objectif es...

Introduction La fatigue est le critère de jugement rapporté par les patients considéré comme d’importance critique à utiliser pour tous les essais d’hémodialyse, validé au cours de l’initiative internationale SONG-HD. Le questionnaire SONG-Fatigue a été développé et validé pour les patients hémodialysés anglophones. Description L’objectif de notre...

Aboriginal and Torres Strait Islander women have lower participation in Australia’s National Cervical Screening Program than other Australian women. Under-screened (including never screened) women’s voices are rarely heard in research evidence, despite being a priority group for interventions to increase cervical screening participation. This study...

Objective Decision‐making regarding medications to manage psoriatic arthritis (PsA) is complex because of multiple disease manifestations and comorbidities. Fear of side effects from systemic medications and misalignment in priorities between patients with PsA and rheumatologists makes shared decision‐making challenging. We aimed to describe the pe...

Randomised controlled clinical trials provide the gold standard for evidence underpinning clinical guidelines and patient centred care. However, this is only true when they are robustly designed, conducted and reported and then only if they include outcomes that are important to patients and clinicians. Important outcomes include those that measure...

Background: There is limited research of electronic tools for self-management for patients with chronic kidney disease (CKD). We sought to evaluate participant engagement, perceived self-efficacy and website usage in a preliminary evaluation of My Kidneys My Health, a patient-facing eHealth tool in Canada. Methods: We conducted an explanatory se...

Objective We aimed to assess patient preferences for the characteristics and outcomes of biologic and targeted synthetic disease‐modifying antirheumatic drugs (DMARDs) to manage psoriatic arthritis. Methods We conducted a discrete choice experiment in patients with psoriatic arthritis from 3 rheumatology centers in Sydney, Australia. We assessed p...

Background: The lack of evidence on the priorities of carers and their Aboriginal and Torres Strait Islander children undermines decisions to improve participant experiences and engagement. Aims: This study describes carer and staff perspectives on the aspects of health services delivery that are important to carers and children. Methods: Nine...

Patient involvement in clinical trial design can facilitate the recruitment and retention of participants as well as potentially increase the uptake of the tested intervention and the impact of the findings on patient outcomes. Despite these benefits, patients still have very limited involvement in designing and conducting trials in nephrology. Man...

Background It is widely acknowledged that the invasion by colonial powers of the Australian continent had profound and detrimental impacts on Aboriginal Communities, including food security. Policies of successive governments since European arrival have since further exacerbated the situation, with food insecurity now affecting 20–25% of Aboriginal...

Background Life participation is an outcome of critical importance to patients receiving peritoneal dialysis (PD). However, there is no widely accepted or validated tool for measuring life participation in patients receiving PD. Methods Online consensus workshop to identify the essential characteristics of life participation as a core outcome, wit...

Introduction Peritoneal dialysis (PD)-related peritonitis is one of the leading causes of discontinuation of PD and is considered a critically important outcome for patients on PD. However, there is no universally accepted method of measuring this outcome in clinical trials. Methods We convened an online consensus workshop to establish a core outc...

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...

Background: Infections are a common complication following kidney transplantation, but are reported inconsistently in clinical trials. This study aimed to identify the infection outcomes of highest priority for patients/caregivers and health professionals to inform a core outcome set to be reported in all kidney transplant clinical trials. Method...

Background Lower socioeconomic status (SES) is associated with lower academic achievement; however, this relationship is understudied in children with chronic kidney disease (CKD). This study examined the relationship between SES and academic performance in children and adolescents with CKD. Methods A total of 377 participants aged 6–18 years with...

Background Numerous factors influence patient recruitment to, and retention on, peritoneal dialysis (PD), but a major challenge is a perceived “inaccessibility” to treating clinicians. It has been suggested that remote patient monitoring (RPM) could be a means of improving such oversight and, thereby, uptake of PD. Objective To describe patient an...

Background The shortage of available organs for life-saving transplants persists worldwide. While a majority support donating their organs or tissue when they die, many have not registered their wish to do so. When registered, next of kin are much more likely to follow-through with the decision to donate. In many countries, most people visit their...

Background Few data exist on the cognitive and academic functioning of children with chronic kidney disease (CKD) over the trajectory of their illness. We aimed to determine the association between CKD stages and cognitive and academic performance in children over time. Methods We included 53 participants (aged 6–18 years) with CKD stages 1–5 ( n...

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 str...

Objectives People with chronic kidney disease requiring dialysis or kidney transplantation in rural areas have worse outcomes, including an increased risk of hospitalisation and mortality and encounter many barriers to accessing kidney replacement therapy. We aim to describe clinicians’ perspectives of equity of access to dialysis and kidney transp...

Rationale and objective Clinical decision making priorities among children, and their parents and clinicians may differ. This study sought to describe clinicians’ perspectives on shared decision-making in pediatric chronic kidney disease (CKD) and identify opportunities to improve shared decision-making and care for children with CKD and their fami...

Rationale & Objective Patients receiving hemodialysis experience high symptom burden and low quality of life (QOL). Electronic patient-reported outcome measures (e-PROMs) monitoring with feedback may be an acceptable intervention to improve health-related QOL for patients receiving hemodialysis. This study explored patient and clinician perspective...

Background Systematic analyses about sex differences in wait-listing and kidney transplantation after dialysis initiation are scarce. We aimed at identifying sex-specific disparities along the path of kidney disease treatment, comparing two countries with distinctive health care systems, the US and Austria, over time. Methods We analyzed subjects...

Background There is currently little evidence of planning for real-world implementation of physical activity interventions. We are undertaking the ComeBACK (Coaching and Exercise for Better Walking) study, a 3-arm hybrid Type 1 randomised controlled trial evaluating a health coaching intervention and a text messaging intervention. We used an implem...

Background The coronavirus (COVID-19) pandemic has seen a global surge in anxiety, depression, post-traumatic stress disorder (PTSD), and stress. Aims This study aimed to describe the perspectives of patients with COVID-19, their family, health professionals, and the general public on the impact of COVID-19 on mental health. Methods A secondary t...

Living with chronic kidney disease (CKD) is associated with hardships for patients and their care-partners. Empowering patients and their care-partners, including family members or friends involved in their care, may help minimize the burden and consequences of CKD related symptoms to enable life participation. There is a need to broaden the focus...

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 outc...

Background Despite an increased cancer risk for patients with chronic kidney disease (CKD), uptake of cancer screening varies due to competing priorities and complex health-related issues. This study aimed to elicit the preferences and important attributes of cancer screening in patients with CKD. Methods An on-line best-worst scaling survey was u...

Background Gastro-intestinal (GI) intolerance is a frequently reported outcome in patients with kidney failure receiving maintenance dialysis and those who have received kidney transplants. Symptoms of GI intolerance (diarrhoea, constipation, bloating, abdominal pain, heart burn, and reflux) are associated with significant reduction in quality of l...

Background Intervention trials promoting physical activity among older people frequently report low and unrepresentative recruitment. Better understanding of reasons for participation can help improve recruitment. This study explored why participants enrolled in the Coaching for Healthy Ageing (CHAnGE) trial, including how their decision was influe...

Introduction Globally, there are more women with chronic kidney disease (CKD), yet they comprise only 40% of patients receiving kidney replacement therapy by dialysis. We aimed to describe the perspectives of nephrologists on gender disparities in access to care and outcomes in CKD and dialysis. Methods We conducted semi-structured interviews with...

Introduction This study aimed to describe the perspectives of patients from rural communities on access to all forms of kidney replacement therapy to inform strategies to address such inequity. Methods Semi structured interviews were conducted. Transcripts were thematically analysed. Results 28 participants, 14 (50%) were female and 5 (17%) ident...

Background Patients with kidney failure are exposed to a surfeit of new information about their disease and treatment, often resulting in ineffective communication between patients and providers. Improving the amount, timing, and individualization of information received has been identified as a priority in in-center hemodialysis care. Objective T...

Living with chronic kidney disease is associated with hardships for patients and their care-partners. Empowering patients and their care-partners, including family members or friends involved in their care, may help minimize the burden and consequences of chronic kidney disease-related symptoms to enable life participation. There is a need to broad...

Introduction Patients with glomerular disease experience symptoms that impair their physical and mental health while managing their treatments, diet, appointments and monitoring general and specific indicators of health and their illness. We sought to describe the perspectives of patients and their care partners on self-management in glomerular dis...

Living with chronic kidney disease (CKD) is associated with hardships for patients and their care-partners. Empowering patients and their care-partners, including family members or friends involved in their care, may help minimize the burden and consequences of CKD-related symptoms to enable life participation. There is a need to broaden the focus...

Background Globally, over 1.2 million people die from chronic kidney disease (CKD) every year. Patients with CKD are up to 10 times more likely to die prematurely than progress to kidney failure requiring kidney replacement therapy. The burden of symptoms and impaired quality of life in CKD may be compounded by comorbidities and treatment side effe...

Focus of Presentation The ‘Antecedents of Renal Disease in Aboriginal Children and Young Adults’ (ARDAC) Study was the first large population-based longitudinal cohort study seeking to identify the early emergence and trajectory of kidney disease among Aboriginal and non-Aboriginal children. Since 2002, 3758 young people (2155 Aboriginal and 1603 n...

Introduction Aboriginal and Torres Strait Islander women experience a higher burden of cervical cancer than non-Indigenous women in Australia. Cervical cancer is preventable partly through human papillomavirus (HPV) vaccination; in Australia, this is delivered through the national school-based immunisation programme. While HPV vaccination uptake is...

Rationale & Objective Coronavirus disease 2019 (COVID-19) disproportionately affects people with chronic diseases such as chronic kidney disease (CKD). We assessed the incidence and outcomes of COVID-19 in people with CKD. Study Design Systematic review and meta-analysis by searching MEDLINE, EMBASE, and PubMed through February 2021. Setting & St...

Rationale and objective The risk of developing colorectal cancer in patients with chronic kidney disease (CKD) is twice that of the general population, but the factors associated with colorectal cancer are poorly understood. The aim of this study was to identify factors associated with advanced colorectal neoplasia in patients with CKD. Study Desi...

Wellbeing is culturally bound and is shaped by many aspects of life, including experiences, beliefs and values. As such, in order to accurately measure wellbeing for a specific cultural group, it is necessary to understand the experiences, beliefs and values that influence the conception and experience of wellbeing of that group. This paper present...

Importance: Transgender and nonbinary youths have a higher incidence of a range of health conditions and may paradoxically face limited access to health care. Objective: To describe the perspectives and needs of transgender youths in accessing health care. Evidence review: MEDLINE, Embase, PsycInfo, and the Cumulative Index to Nursing and Alli...

Background: Patients receiving dialysis have low employment rates, which compounds poorer health and socioeconomic outcomes. Reasons for under- and unemployment remain underexplored. We aimed to describe the perspectives of patients receiving hemodialysis (HD) or peritoneal dialysis (PD) and their caregivers on ability to work. Methods: Data was...

Background Research on adherence interventions in rheumatology is limited by methodological issues, particularly heterogeneous outcomes. We aimed to describe researchers’ experiences with conducting interventional studies targeting medication adherence in rheumatology and their perspectives on establishing core outcomes. Methods Semi-structured in...

Background Pain is the highest prioritized patient-reported outcome in people with autosomal dominant polycystic kidney disease (ADPKD) but remains infrequently and inconsistently measured in clinical trials and poorly managed in clinical setting. A recently completed systematic review of pain in ADPKD identified 26 different outcome measures. None...

Background There is little information available to inform the cost‐effectiveness of eHealth interventions in improving patient health outcomes. A trial‐based economic evaluation was undertaken aiming to inform the feasibility of conducting a mobile phone text messaging programme targeting dietary behaviours in people receiving haemodialysis. Meth...

There is no consensus on how best to measure responses to interventions among children and adults with cystic fibrosis (CF). We have systematically reviewed and summarised the characteristics and measurement properties of tests and tools that have been used to capture outcomes in studies among people with CF, including their reliability, validity a...

Living with chronic kidney disease (CKD) is associated with hardships for patients and their care partners. Empowering patients and their care partners, including family members and friends involved in their care, may help minimize the burden and consequences of CKD-related symptoms to enable increased life participation. There is a need to broaden...

Aboriginal and Torres Strait Islander people experience a greater range of health and social disadvantages compared to other Australians. Wellbeing is a culturally-bound construct, and to date, a national evidence base around the components of wellbeing for Aboriginal and Torres Strait Islander people is lacking. Understanding and measurement of we...

Background: Over 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 t...

Living with chronic kidney disease (CKD) is associated with hardships for patients and their care-partners. Empowering patients and their care-partners, including family members or friends involved in their care, may help minimize the burden and consequences of CKD related symptoms to enable life participation. There is a need to broaden the focus...

Living with chronic kidney disease (CKD) is associated with hardships for patients and their care-partners. Empowering patients and their care-partners, including family members or friends involved in their care, may help minimize the burden and consequences of CKD-related symptoms to enable life participation. There is a need to broaden the focus...

Background The COVID-19 pandemic has challenged the delivery of health services. Telehealth allows delivery of care without in-person contacts and minimizes the risk of vial transmission. We aimed to describe the perspectives of kidney transplant recipients on the benefits, challenges and risks of telehealth. Methods We conducted five online focus...

Pain is a common symptom in people with autosomal dominant polycystic kidney disease (ADPKD), but it is assessed and reported inconsistently in research, and the validity of the measures remain uncertain. The aim of this study was to identify the characteristics, content, and psychometric properties of measures for pain used in ADPKD. We conducted...

A correction to this paper has been published: https://doi.org/10.1007/s40620-021-01073-3

Objective To describe the perspectives of patients with inflammatory arthritis (IA) on outcome domains of trials evaluating medication adherence interventions. Methods Adult patients (≥18 years) with IA using disease-modifying anti-rheumatic drugs (DMARDs) from centres across Australia, Canada, and the Netherlands participated in six focus groups...

Background End of life care for residents with advanced dementia in the aged care setting is complex. There is prolonged and progressive cognitive decline, uncertain disease trajectory, significant symptom burden and infrequent access to specialist palliative care. Residential aged care managers offer a unique perspective in understanding the exper...

Living with chronic kidney disease (CKD) is associated with hardships for patients and their care-partners. Empowering patients and their care-partners, including family members or friends involved in their care, may help minimize the burden and consequences of CKD-related symptoms to enable life participation. There is a need to broaden the focus...

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 an...

Objective To describe the drivers of distress and motivations faced by interdisciplinary clinicians who were on the frontline caring for patients with COVID-19. Design 50 semistructured interviews. Transcripts were analysed using qualitative thematic analysis. Setting A safety-net hospital in Denver, Colorado. Participants Interdisciplinary fron...

Outcomes relevant to treatment decision-making are inconsistently reported in trials involving glomerular disease. Here, we sought to establish a consensus-derived set of critically important outcomes designed to be reported in all future trials by using an online, international two-round Delphi survey in English. To develop this, patients with glo...