Education programmes for people with chronic kidney disease and diabetes.

Background: Adherence to complex regimens for people with chronic kidney disease (CKD) and diabetes is often poor. Interventions to enhance adherence require intensive education and behavioural counselling. However, whether the existing evidence is scientifically rigorous and can support recommendations for routine use of educational programmes in people with CKD and diabetes is still unknown.

Consumer involvement in the development and dissemination of chronic kidney disease guidelines: a summary of a meaningful and sustainable approach developed by Caring for Australians and New ZealandeRs with kidney Impairment guidelines.

Objectives: The involvement of consumers (people with lived experience of disease) in guidelines is widely advocated to improve their relevance and uptake. However, the approaches to consumer involvement in guidelines vary and are not well documented. We describe the consumer involvement framework of Caring for Australians and New ZealandeRs with kidney Impairment Guidelines.

Chronic disease prevention programs offered by Aboriginal Community Controlled Health Services in New South Wales, Australia.

Objectives: To identify and describe chronic disease prevention programs offered by Aboriginal Community Controlled Health Services (ACCHSs) in New South Wales (NSW), Australia.

Methods: ACCHSs were identified through the Aboriginal Health and Medical Research Council of NSW website. Chronic disease programs were identified from the Facebook page and website of each ACCHS.

Patient needs and priorities for patient navigator programmes in chronic kidney disease: a workshop report.

Background And Objective: Patients with early chronic kidney disease (CKD) face challenges in accessing healthcare, including delays in diagnosis, fragmented speciality care and lack of tailored education and psychosocial support. Patient navigator programmes have the potential to improve the process of care and outcomes. The objective of this study is to describe the experiences of patients on communication, access of care and self-management and their perspectives on patient navigator programmes in early CKD.

Patient and Caregiver Priorities for Outcomes in CKD: A Multinational Nominal Group Technique Study.

Rationale & Objective: Patients with chronic kidney disease (CKD) are at an increased risk for premature death, cardiovascular disease, and burdensome symptoms that impair quality of life. We aimed to identify patient and caregiver priorities for outcomes in CKD.

Study Design: Focus groups with nominal group technique.

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.

Identifying and integrating patient and caregiver perspectives in clinical practice guidelines for percutaneous renal biopsy.

Aim: Percutaneous renal biopsy is often essential for providing reliable diagnostic and prognostic information for people with suspected kidney disease, however the procedure can lead to complications and concerns among patients. This study aims to identify and integrate patient priorities and perspectives into the Kidney Health Australia - Caring for Australasians with Renal Impairment clinical practice guidelines for renal biopsy, to ensure patient-relevance.

Methods: We convened a workshop, consisting of three simultaneous focus groups and a plenary session, with 10 patients who had undergone a renal biopsy and seven caregivers.

Research priority setting in childhood chronic disease: a systematic review.

Objective: To evaluate research priority setting approaches in childhood chronic diseases and to describe the priorities of stakeholders including patients, caregivers/families and health professionals.

Design: We conducted a systematic review of MEDLINE, Embase, PsycINFO and CINAHL from inception to 16 October 2016. Studies that elicited stakeholder priorities for paediatric chronic disease research were eligible for inclusion.

Patient awareness and beliefs about the risk factors and comorbidities associated with chronic kidney disease : A mixed-methods study.

Aim: Diabetes, hypertension and smoking may contribute to the development and progression of chronic kidney disease (CKD) and its complications. The aim of this study was to assess patients' awareness and beliefs about these and other risk factors associated with CKD.

Methods: Participants with CKD Stages 1-5 were purposively sampled for participation in a mixed methods study.

Educational Interventions for Patients With CKD: A Systematic Review.

Background: Preventing progression from earlier stages of chronic kidney disease (CKD) to end-stage kidney disease and minimizing the risk for cardiovascular events and other complications is central to the management of CKD. Patients' active participation in their own care is critical, but may be limited by their lack of awareness and understanding of CKD. We aimed to evaluate educational interventions for primary and secondary prevention of CKD.

Autosomal Dominant Polycystic Kidney Disease: A Path Forward.

Autosomal dominant polycystic kidney disease (ADPKD) is the commonest inherited cause of renal failure in adults, and is due to loss-of-function mutations in either the PKD1 or PKD2 genes, which encode polycystin-1 and polycystin-2, respectively. These proteins have an essential role in maintaining the geometric structure of the distal collecting duct in the kidney in adult life, and their dysfunction predisposes to renal cyst formation. The typical renal phenotype of ADPKD is the insidious development of hundreds of renal cysts, which form in childhood and grow progressively through life, causing end-stage kidney failure in the fifth decade in about half affected by the mutation.

Identifying and integrating consumer perspectives in clinical practice guidelines on autosomal-dominant polycystic kidney disease.

Aim: This study aimed to identify consumer perspectives on topics and outcomes to integrate in the Kidney Health Australia Caring for Australasians with Renal Impairment (KHA-CARI) clinical practice guidelines on autosomal-dominant polycystic kidney disease (ADPKD).

Methods: A workshop involving three concurrent focus groups with 18 consumers (patients with ADPKD (n = 15), caregivers (n = 3)) was convened. Guideline topics, interventions and outcomes were identified, and integrated into guideline development.

Knowledge deficit of patients with stage 1-4 CKD: a focus group study.

Background: Patients with early-stage chronic kidney disease (CKD) must make lifestyle modifications and adhere to treatment regimens to prevent their progression to end-stage kidney disease. The aim of this study was to elicit the perspectives of patients with stage 1-4 CKD about their disease, with a specific focus on their information needs in managing and living with CKD and its sequelae.

Methods: Patients with CKD stages 1-4 were purposively sampled from three major hospitals in Sydney, Australia to participate in focus groups.

Prevention, detection and management of early chronic kidney disease: a systematic review of clinical practice guidelines.

Aim: In response to the increase in Chronic Kidney Disease (CKD) worldwide, several professional organizations have developed clinical practice guidelines to manage and prevent its progression. This study aims to compare the scope, content and consistency of published guidelines on CKD stages I-III.

Methods: Electronic databases of the medical literature, guideline organizations, and the websites of nephrology societies were searched to November 2011.

Consumer involvement in topic and outcome selection in the development of clinical practice guidelines.

Background: Consumer involvement in guideline development is advocated, but minimal participation, such as a nominated consumer representative on a guideline working group, can inhibit their decision-making power and contribution. Little is known about how to involve consumers more effectively in guideline development.

Objective: To describe a targeted approach for involving consumers actively in guideline development, by focusing on topic and outcome selection, and to discuss the impact on content and structure of the final guideline.

Barriers to timely arteriovenous fistula creation: a study of providers and patients.

Background: Current clinical practice guidelines recommend a native arteriovenous fistula (AVF) as the vascular access of first choice. Despite this, most patients in western countries start hemodialysis therapy using a catheter. Little is known regarding specific physician and system characteristics that may be responsible for delays in permanent access creation.