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. This is an update of a review first published in 2011. OBJECTIVES: To evaluate the benefits and harms of education programmes for people with CKD and diabetes. SEARCH METHODS: We searched the Cochrane Kidney and Transplant Register of Studies up to 19 July 2024 using search terms relevant to this review. Studies in the Register are identified through searches of CENTRAL, MEDLINE, and EMBASE, conference proceedings, the International Clinical Trials Registry Platform (ICTRP) Search Portal, and ClinicalTrials.gov. SELECTION CRITERIA: We included randomised controlled trials (RCTs) and quasi-RCTs investigating the benefits and harms of educational programmes (information and behavioural instructions and advice given by a healthcare provider, who could be a nurse, pharmacist, educator, health professional, medical practitioner, or healthcare provider, through verbal, written, audio-recording, or computer-aided modalities) for people 18 years and older with CKD and diabetes. DATA COLLECTION AND ANALYSIS: Two authors independently screened the literature, determined study eligibility, assessed quality, and extracted and entered data. We expressed dichotomous outcomes as risk ratios (RR) with 95% confidence intervals (CI) and continuous data as mean difference (MD) with 95% CI. Data were pooled using the random-effects model. The certainty of the evidence was assessed using the Grades of Recommendation, Assessment, Development and Evaluation (GRADE) approach. MAIN RESULTS: Eight studies (13 reports, 840 randomised participants) were included. The overall risk of bias was low for objective outcomes and attrition bias, unclear for selection bias, reporting bias and other biases, and high for subjective outcomes. Education programmes compared to routine care alone probably decrease glycated haemoglobin (HbA1c) (4 studies, 467 participants: MD -0.42%, 95% CI -0.53 to -0.31; moderate certainty evidence; 13.5 months follow-up) and may decrease total cholesterol (179 participants: MD -0.35 mmol/L, 95% CI -0.63 to -00.07; low certainty evidence) and low-density lipoprotein (LDL) cholesterol (179 participants: MD -0.40 mmol/L, 95% CI -0.65 to -0.14; low certainty evidence) at 18 months of follow-up. One study (83 participants) reported education programmes for people receiving dialysis who have diabetes may improve the diabetes knowledge of diagnosis, monitoring, hypoglycaemia, hyperglycaemia, medication with insulin, oral medication, personal health habits, diet, exercise, chronic complications, and living with diabetes and coping with stress (all low certainty evidence). There may be an improvement in the general knowledge of diabetes at the end of the intervention and at the end of the three-month follow-up (one study, 97 participants; low certainty evidence) in people with diabetes and moderately increased albuminuria (A2). In participants with diabetes and moderately increased albuminuria (A2) (one study, 97 participants), education programmes may improve a participant's beliefs in treatment effectiveness and total self-efficacy at the end of five weeks compared to routine care (low certainty evidence). Self-efficacy for in-home blood glucose monitoring and beliefs in personal control may increase at the end of the three-month follow-up (low certainty evidence). There were no differences in other self-efficacy measures. One study (100 participants) reported an education programme may increase change in behaviour for general diet, specific diet and home blood glucose monitoring at the end of treatment (low certainty evidence); however, at the end of three months of follow-up, there may be no difference in any behaviour change outcomes (all low certainty evidence). There were uncertain effects on death, serious hypoglycaemia, and kidney failure due to very low certainty evidence. No data was available for changes in kidney function (creatinine clearance, serum creatinine, doubling of serum creatinine or proteinuria). For an education programme plus multidisciplinary, co-ordinated care compared to routine care, there may be little or no difference in HbA1c, kidney failure, estimated glomerular filtration rate (eGFR), systolic or diastolic blood pressure, hypoglycaemia, hyperglycaemia, and LDL and high-density lipoprotein (HDL) cholesterol (all low certainty evidence in participants with type-2 diabetes mellitus and documented advanced diabetic nephropathy). There were no data for death, patient-orientated measures, change in kidney function (other than eGFR and albuminuria), cardiovascular disease morbidity, quality of life, or adverse events. AUTHORS' CONCLUSIONS: Education programmes may improve knowledge of some areas related to diabetes care and some self-management practices. Education programmes probably decrease HbA1c in people with CKD and diabetes, but the effect on other clinical outcomes is unclear. This review only included eight studies with small sample sizes. Therefore, more randomised studies are needed to examine the efficacy of education programmes on important clinical outcomes in people with CKD and diabetes.

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. SETTING & PARTICIPANTS: Adult patients with CKD (all stages) and caregivers in the United States, Australia, and United Kingdom. ANALYTICAL APPROACH: Participants identified, ranked, and discussed outcomes that were important during the stages of CKD before kidney replacement therapy. For each outcome, we calculated a mean importance score (scale, 0-1). Qualitative data were analyzed using thematic analysis. RESULTS: 67 (54 patients, 13 caregivers) participated in 10 groups and identified 36 outcomes. The 5 top-ranked outcomes for patients were kidney function (importance score, 0.42), end-stage kidney disease (0.29), fatigue (0.26), mortality (0.25), and life participation (0.20); and for caregivers, the top 5 outcomes were life participation (importance score, 0.38), kidney function (0.37), mortality (0.23), fatigue (0.21), and anxiety (0.20). Blood pressure, cognition, and depression were consistently ranked in the top 10 outcomes across role (patient/caregiver), country, and treatment stage. Five themes were identified: re-evaluating and reframing life, intensified kidney consciousness, battling unrelenting and debilitating burdens, dreading upheaval and constraints, and taboo and unspoken concerns. LIMITATIONS: Only English-speaking participants were included. CONCLUSIONS: Patients and caregivers gave highest priority to kidney function, mortality, fatigue, life participation, anxiety, and depression. Consistent reporting of these outcomes in research may inform shared decision making based on patient and caregiver priorities in CKD.

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. Topics and outcomes prioritized by patients and their caregivers were compared to those identified by the guideline working group, which was comprised of seven nephrologists. Transcripts and flipcharts were analyzed thematically to identify the reasons for participants' choices. RESULTS: In total, 34 topics/outcomes were identified, 14 of which were common to the list of 28 previously identified by the guideline working group. Most of the new topics identified by patients/caregivers were related to communication and education, psychosocial support, and self-management. We identified five themes underpinning the reasons for topic and outcome selection: alleviating anxiety and unnecessary distress, minimizing discomfort and disruption, supporting family and caregivers, enabling self-management, and protecting their kidney. A new topic on patient care and education was added to the guideline as a result. CONCLUSIONS: Patient and caregiver involvement in developing guidelines on renal biopsy ensured that their concerns and needs for education, psychosocial support, and self-management were explicitly addressed; enabling a patient-centred approach to renal biopsies.

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. Focus group participants completed a survey on CKD risk factors and discussed the reasons for their choices. Thematic analysis was used to analyse the qualitative data. RESULTS: Of the 38 participants, the proportion who identified hypertension, family history, diabetes and obesity as risk factors for CKD were 89%, 87%, 87% and 70% respectively. Only 54% and 38% recognized that smoking and Aboriginal or Torres Strait Islander status were risk factors. Participants considered the risks of heart attack, stroke and premature mortality to be 20-40% lower in people with CKD than those with diabetes or pre-existing cardiovascular disease. Five themes were identified: invisibility (lack of signs and symptoms of CKD), invincibility (participants did not feel they were at risk), lacking awareness (identified not knowing much about their disease), cumulative comorbidities (concerned about the increased risks of associated diseases) and inevitability of death (there is no cure for CKD). CONCLUSION: Participants had good understanding of some risk factors for CKD (hypertension and diabetes) but limited understanding of others. Awareness of comorbidities was also less than for other chronic conditions. Compared with diabetes and cardiovascular disease, CKD was perceived to pose less of a threat to life. Patient education that addresses CKD risk factors, comorbidities and outcomes may increase awareness and foster better self-management for people with CKD.

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. STUDY DESIGN: Systematic review. Electronic databases were searched to December 2015, with study quality assessed using the Cochrane Collaboration risk-of-bias tool. SETTING & POPULATION: People with CKD stages 1 to 5 in community and hospital settings (studies with only patients with CKD stage 5, kidney transplant recipients irrespective of glomerular filtration rate, or patients receiving dialysis were excluded). SELECTION CRITERIA FOR STUDIES: Randomized controlled trials and nonrandomized studies of educational interventions. INTERVENTIONS: Educational strategies in people with CKD. OUTCOMES: Knowledge, self-management, quality-of-life, and clinical end points. RESULTS: 26 studies (12 trials, 14 observational studies) involving 5,403 participants were included. Risk of bias was high in most studies. Interventions were multifaceted, including face-to-face teaching (26 studies), written information (20 studies), and telephone follow-up (13 studies). 20 studies involved 1-on-1 patient/educator interaction and 14 incorporated group sessions. 9 studies showed improved outcomes for quality of life, knowledge, and self-management; 9 had improved clinical end points; and 2 studies showed improvements in both patient-reported and clinical outcomes. Characteristics of effective interventions included teaching sessions that were interactive and workshops/practical skills (13/15 studies); integrated negotiated goal setting (10/13 studies); involved groups of patients (12/14 studies), their families (4/4 studies), and a multidisciplinary team (6/6 studies); and had frequent (weekly [4/5 studies] or monthly [7/7 studies]) participant/educator encounters. LIMITATIONS: A meta-analysis was not possible due to heterogeneity of the interventions and outcomes measured. CONCLUSIONS: Well-designed, interactive, frequent, and multifaceted educational interventions that include both individual and group participation may improve knowledge, self-management, and patient outcomes.

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. Thematic analysis was used to analyse the reasons for their choices. RESULTS: Twenty-two priority topics were identified, with most focussed on non-pharmacological management (diet, fluid intake, physical activity, complementary medicine), pain management and psychosocial care (mental health, counselling, cognitive and behavioural training, education, support groups). They also identified 26 outcomes including quality of life (QoL), progression of kidney disease, kidney function, cyst growth and nephrotoxity. Almost all topics and outcomes suggested were identified by health professionals with the exception of five topics/outcomes. Six themes reflected reasons for their choices: clarifying ambiguities, resolving debilitating pain, concern for family, preparedness for the future, taking control and significance of impact. CONCLUSION: Although there was considerable concordance between the priority topics and outcomes of health professionals and consumers for guidelines of ADPKD, there was also important discordance with consumers focused on fewer issues, but particularly on lifestyle, psychosocial support, pain, and QoL and renal outcomes. Active consumer engagement in guidelines development can help to ensure the inclusion of patient-centred recommendations, which may lead to better management of disease progression, symptoms, complications, and psychosocial impact.

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. Transcripts were thematically analysed. RESULTS: From nine focus groups including 38 participants, six major themes were identified: medical attentiveness (shared decision-making, rapport, indifference and insensitivity); learning self-management (diet and nutrition, barriers to physical activity, medication safety); contextualizing comorbidities (prominence of CKD, contradictory treatment); prognostic uncertainty (hopelessness, fear of disease progression, disbelief regarding diagnosis); motivation and coping mechanisms (engage in research, pro-active management, optimism, feeling normal); and knowledge gaps (practical advice, access to information, comprehension of pathology results and CKD diagnosis, education for general practitioners). CONCLUSION: Patients capacity to slow the progression of CKD may be limited by their lack of knowledge about the disease, its comorbidities, psychosocial influences and their ability to interact and communicate effectively with their health-care provider. Support from a multidisciplinary care team, combined with provision of comprehensive, accessible and practical educational resources may enhance patients' ability and motivation to access and adhere to therapeutic and lifestyle interventions to retard progression of CKD.

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. STUDY DESIGN AND SETTING: We used a descriptive document analysis to collate all relevant policies, documents, e-mails, and presentations on consumer involvement in our organizations. We performed a narrative synthesis of collated data to summarize our evolving consumer involvement approach in guidelines. RESULTS: We involve consumers at all levels of Caring for Australians and New ZealandeRs with kidney Impairment guideline development and dissemination according to their capacity, from conducting consumer workshops to inform the scope of guidelines, to including consumers as members of the guideline Working Groups and overseeing operations and governance as members of the Steering Committee and staff. Our approach has resulted in tangible outcomes including high-priority topics on patient education, psychosocial care, and clinical care pathways, and focusing the literature reviews to assess patient-important outcomes. The ongoing partnership with consumers led to the generation of consumer version guidelines to improve guideline dissemination and translation to support shared decision-making. CONCLUSION: Meaningful consumer involvement can be achieved through a comprehensive approach across the entire lifecycle of guidelines. However, it must be individualized by ensuring that the involvement of consumers is timely and flexible. Future work is needed to assess the impact of consumer involvement in guideline development.

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. The Appraisal of Guidelines for Research and Evaluation (AGREE) II instrument and textual synthesis was used to appraise and compare recommendations. RESULTS: One consensus statement and 15 guidelines were identified and included. Methodological rigour across guidelines was variable, with average domain scores ranging from 24% to 95%. For detection of CKD, all guidelines recommended estimated glomerular filtration rate measurement, some also recommended serum creatinine and dipstick urinalysis. The recommended protein and albumin creatinine ratios and proteinuria definition thresholds varied (>150-300 mg/day to >500 mg/day). Blood pressure targets ranged (<125/75 to <140/90 mmHg). Angiotensin converting enzyme inhibitor and angiotensin receptor blockers were recommended for hypertension, as combined or as monotherapy. Protein intake recommendations varied (no restriction or 0.75 g/kg per day-1.0 g/kg per day). Salt intake of 6 g/day was recommended by most. Psychosocial support and education were recommended by few but specific strategies were absent. CONCLUSION: CKD guidelines were consistent in scope but were variable with respect to their recommendations, coverage and methodological quality. To promote effective primary and secondary prevention of CKD, regularly updated guidelines that are based on the best available evidence and augmented with healthcare context-specific strategies for implementation are warranted.