To describe how the Australian Government Department of Health policies address equity in the management of chronic kidney disease (CKD).
We searched the websites of the Australian Government ...Department of Health, Kidney Health Australia, Australian Indigenous HealthInfoNet and the National Rural Health Alliance for policies using the search terms: kidney, renal and chronic.
We included 24 policies that addressed groups of people that experience health inequities: 23 addressed Aboriginal and Torres Strait Islander peoples, 18 rural/remote communities, 12 low socioeconomic status groups, six culturally and linguistically diverse communities and four addressed gender disparities. The scope of the policies ranged from broad national frameworks to subsidised access to health services and medicines. Only two policies explicitly addressed equity for patients with CKD.
CKD outcomes are highly variable across population groups yet Australian Government policies that address access to and the experience of care are limited in both number and their attention to equity issues.
In Australia, some groups of people with CKD have a substantially higher risk of mortality and morbidity than the general CKD population. We advocate for the development and implementation of policies to attain equity for people with CKD.
ObjectivesPeritoneal dialysis (PD) allows patients increased autonomy and flexibility; however, both infectious and non-infectious complications may lead to technique failure, which shortens ...treatment longevity. Maintaining patients on PD remains a major challenge for nephrologists. This study aims to describe nephrologists’ perspectives on technique survival in PD.DesignQualitative semistructured interview study. Transcripts were thematically analysed.Setting and participants30 nephrologists across 11 countries including Australia, the USA, the UK, Hong Kong, Canada, Singapore, Japan, New Zealand, Thailand, Colombia and Uruguay were interviewed from April 2017 to November 2019.ResultsWe identified four themes: defining patient suitability (confidence in capacity for self-management, ensuring clinical stability and expected resilience), building endurance (facilitating access to practical support, improving mental well-being, optimising quality of care and training to reduce risk of complications), establishing rapport through effective communications (managing expectations to enhance trust, individualising care and harnessing a multidisciplinary approach) and confronting fear and acknowledging barriers to haemodialysis (preventing crash landing to haemodialysis, facing concerns of losing independence and positive framing of haemodialysis).ConclusionNephrologists reported that technique survival in PD is influenced by patients’ medical circumstances, psychological motivation and positively influenced by the education and support provided by treating clinicians and families. Strategies to enhance patients’ knowledge on PD and communication with patients about technique survival in PD are needed to build trust, set patient expectations of treatment and improve the process of transition off PD.
Abstract
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 effects. However, patient-important outcomes remain inconsistently and infrequently reported in trials in patients with CKD, which can limit evidence-informed decision-making. The Standardised Outcomes in Nephrology – Chronic Kidney Disease (SONG-CKD) aims to establish a consensus-based core outcome set for trials in patients with CKD not yet requiring kidney replacement therapy to ensure outcomes of relevance to patients, caregivers and health professionals are consistently reported in trials.
Methods
SONG-CKD involves four phases:
a systematic review
to identify outcomes (domains and measures) that have been reported in randomised controlled trials involving adults with CKD who do not require kidney replacement therapy;
stakeholder key informant interviews
with health professionals involved in the care of adults with CKD to ascertain their views on establishing core outcomes in CKD; an
international two-round online Delphi survey
with patients, caregivers, clinicians, researchers, policy makers and industry representatives to obtain consensus on critically important outcome domains; and
stakeholder consensus workshops
to review and finalise the set of core outcome domains for trials in CKD.
Discussion
Establishing a core outcome set to be reported in trials in patients with CKD will enhance the relevance, transparency and impact of research to improve the lives of people with CKD.
Trial registration
Not applicable. This study is registered with the Core Outcome Measures in Effectiveness Trials (COMET) database:
http://www.comet-initiative.org/Studies/Details/1653
.
Abstract
Background
This update summarises key changes made to the protocol since the publication of the original protocol for the NAVKIDS
2
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 original protocol was published in
BMC Nephrology
(
https://doi.org/10.1186/s12882-019-1325-y
) prior to the commencement of trial recruitment. During the course of the trial, some key methodological changes needed to be made including changes to eligibility criteria (addition of patients with CKD stages 1–2, broadening of financial status eligibility criterion, addition of patients living in rural/remote areas, modification of age eligibility to 0–16 years, addition of limits related to the language spoken by family, guidance regarding families with multiple eligible children), changes to sites, reduction of sample size, addition of virtual options for consent and study procedures in response to the COVID-19 pandemic, removal of staggered recruitment across sites, addition of outcomes, and changes to the timing and number of assessments. This update summarises the changes made and their rationale and provides the detailed plan for statistical analysis of the trial. These changes have been finalised prior to the completion of study follow-up and the commencement of data analysis.
Trial registration
Australian New Zealand Clinical Trials Registry (ANZCTR)
ACTRN12618001152213
. Prospectively registered on 12 July 2018
Abstract
Background
Chronic kidney disease (CKD) is a devastating illness associated with increased mortality, reduced quality of life, impaired growth, neurocognitive impairment and psychosocial ...maladjustment in children. There is growing evidence of socioeconomic disparities in health outcomes among children with CKD. Patient navigators are trained non-medical personnel who assist patients with chronic conditions journey through the continuum of care and transit across different care settings. They help vulnerable and underserved populations to better understand their diagnosis, treatment options, and available resources, guide them through complex medical systems, and help them to overcome barriers to health care access. Given the complexity and chronicity of the disease process and concerns that current models of care may not adequately support the provision of high-level care in children with CKD from socioeconomically disadvantaged backgrounds, a patient navigator program may improve the provision of care and overall health of children with CKD.
Methods
The NAV-KIDS
2
trial is a multi-centre, staggered entry, waitlisted randomised controlled trial assessing the health benefits and costs of a patient navigator program in children with CKD (stages 3–5, on dialysis, and with kidney transplants), who are of low socioeconomic backgrounds. Across 5 sites, 210 patients aged from 3 to 17 years will be randomised to immediate receipt of a patient navigator intervention for 24 weeks or waitlisting with standard care until receipt of a patient navigator at 24 weeks. The primary outcome is child self-rated health (SRH) 6-months after completion of the intervention. Other outcomes include utility-based quality of life, caregiver SRH, satisfaction with healthcare, progression of kidney dysfunction, other biomarkers, missed school days, hospitalisations and mortality. The trial also includes an economic evaluation and process evaluation, which will assess the cost-effectiveness, fidelity and barriers and enablers of implementing a patient navigator program in this setting.
Discussion
This study will provide clear evidence on the effectiveness and cost-effectiveness of a new intervention aiming to improve overall health and well-being for children with CKD from socioeconomically disadvantaged backgrounds, through a high quality, well-powered clinical trial.
Trial registration
Prospectively registered (12/07/2018) on the Australian New Zealand Clinical Trials Registry (
ACTRN12618001152213
).
•To be relevant clinical trials must report outcomes that are critically important to patients and clinicians including patient reported outcomes.•Patient reported outcomes must be supported by valid ...and reliable measures.•Validity and reliability requires the application of research methods that include quantitative and qualitative techniques.•Patient reported outcome measures are critical to providing evidence to support clinical guidelines and patient centred care.
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 impact on patient experience, quality of life, overall well-being, and physical, social, cognitive and emotional functioning, all of which require patient reported outcome measures (PROMs). Patient centred care must be underpinned by objective evidence of the effect of interventions on outcomes that are important to patients. Evidence for patient reported outcomes must be supported by valid and reliable PROMs. Importantly the PROM must reflect patient experience of the impact of the intervention on the outcome and enable quantitative evaluation of that impact. The purpose of this paper is to highlight the critical role of mixed methods research in developing PROMs that are valid (measure what they purport to measure), acceptable to those reporting the outcome and able to reliably detect meaningful differences between individuals with different conditions or severity and with time. This can only be achieved through a structured mixed methods program combining qualitative and quantitative research techniques.
Clotting of the extracorporeal circuit is a complication in the process of hemodialysis that can result in missed or shortened dialysis sessions, higher nursing workload, and elevated cost of ...treatment. Repercussions of inadequate dialysis may include patient blood loss, fluid overload, build-up of minerals, higher hospitalization rates, and poor quality of life, contributing to increased patient distress. Preventing clotting through anticoagulation therapy is the key to maintaining patency of the dialysis circuit and supporting dialysis adequacy. Despite the severe consequences of clotting in the extracorporeal circuit patients encounter, their perspectives on decision-making regarding anticoagulation therapy are not well known. In this article, we discuss patients' perspectives and priorities around clotting and anticoagulation therapy and outline ways to support their treatment through shared decision-making. Insights into patients' perspectives on addressing thrombotic complications of the extracorporeal circuit can inform strategies to improve care and outcomes for patients receiving hemodialysis.
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