Self-management support for people with chronic kidney disease: Patient perspectives

Background Self-management of chronic kidney disease (CKD) is crucial for health outcomes and people need to be effectively supported by healthcare professionals (HCPs). Some programmes designed to improve self-management have been implemented, but people with the disease are rarely consulted regarding what they desire from these programmes. Objectives To provide a synthesis of the literature on preferences for self-management support of people with CKD. Design An integrative review. Methods Four databases (MedLine, CINAHL, PsycARTICLES and PsycINFO) were searched using relevant search terms. Results The search strategy identified 1,913 records, of which 12 studies met inclusion criteria. Ten themes were identified as important areas to be addressed by self-management interventions. In addition, patient suggestions for implementation of such interventions are discussed. Conclusion The principles of a person-centred approach ought to frame the support provided by HCPs when supporting those with CKD to better self-manage.

The association of chronic kidney disease and dialysis treatment with foot ulceration and major amputation

Objective The objective of this study was to investigate the risk of chronic kidney disease (CKD) stage 4-5 and dialysis treatment on incidence of foot ulceration and major lower extremity amputation in comparison to CKD stage 3. Methods In this retrospective study, all individuals who visited our hospital between 2006 and 2012 because of CKD stages 3 to 5 or dialysis treatment were included. Medical records were reviewed for incidence of foot ulceration and major amputation. The time from CKD 3, CKD 4-5, and dialysis treatment until first foot ulceration and first major lower extremity amputation was calculated and analyzed by Kaplan-Meier curves and multivariate Cox proportional hazards model. Diabetes mellitus, peripheral arterial disease, peripheral neuropathy, and foot deformities were included for potential confounding. Results A total of 669 individuals were included: 539 in CKD 3, 540 in CKD 4-5, and 259 in dialysis treatment (individuals could progress from one group to the next). Unadjusted foot ulcer incidence rates per 1000 patients per year were 12 for CKD 3, 47 for CKD 4-5, and 104 for dialysis (P < .001). In multivariate analyses, the hazard ratio for incidence of foot ulceration was 4.0 (95% confidence interval [CI], 2.6-6.3) in CKD 4-5 and 7.6 (95% CI, 4.8-12.1) in dialysis treatment compared with CKD 3. Hazard ratios for incidence of major amputation were 9.5 (95% CI, 2.1-43.0) and 15 (95% CI, 3.3-71.0), respectively. Conclusions CKD 4-5 and dialysis treatment are independent risk factors for foot ulceration and major amputation compared with CKD 3. Maximum effort is needed in daily clinical practice to prevent foot ulcers and their devastating consequences in all individuals with CKD 4-5 or dialysis treatment.

Which patients with chronic kidney disease have the greatest symptom burden? A comparative study of advanced CKD stage and dialysis modality

Background Chronic kidney disease (CKD) leads to a range of symptoms, which are often under-recognised and little is known about the multidimensional symptom experience in advanced CKD. Objectives To examine (1) symptom burden at CKD stages 4 and 5, and dialysis modalities, and (2) demographic and renal history correlates of symptom burden. Methods Using a cross-sectional design, a convenience sample of 436 people with CKD was recruited from three hospitals. The CKD Symptom Burden Index (CKD-SBI) was used to measure the prevalence, severity, distress and frequency of 32 symptoms. Demographic and renal history data were also collected. Results Of the sample, 75.5 % were receiving dialysis (haemodialysis, n = 287; peritoneal dialysis, n = 42) and 24.5 % were not undergoing dialysis (stage 4, n = 69; stage 5, n = 38). Participants reported an average of 13.01 ± 7.67 symptoms. Fatigue and pain were common and burdensome across all symptom dimensions. While approximately one-third experienced sexual symptoms, when reported these symptoms were frequent, severe and distressing. Haemodialysis, older age and being female were independently associated with greater symptom burden. Conclusions In CKD, symptom burden is better understood when capturing the multidimensional aspects of a range of physical and psychological symptoms. Fatigue, pain and sexual dysfunction are key contributors to symptom burden, and these symptoms are often under-recognised and warrant routine assessment. The CKD-SBI offers a valuable tool for renal clinicians to assess symptom burden, leading to the commencement of timely and appropriate interventions.

Measuring the multidimensions of symptoms in people with advanced stages of chronic kidney disease

Chronic kidney disease (CKD) is increasing globally and in Saudi Arabia it affects approximately 8% annual increment of dialysis population. It is associated with a high symptom burden. Previous studies have largely reported on the prevalence of symptoms only in the haemodialysis population. This study examined symptom burden across disease stages and treatment groups in advanced CKD, and their correlation with demographic and clinical factors. Using a cross-sectional design, a convenience sample of 436 patients with CKD was recruited from three hospitals in Saudi Arabia. The CKD Symptom Burden Index (CKD-SBI) was used to measure 32 CKD symptoms. Demographic and clinical data were also collected. Of the sample 75.5% were receiving dialysis (haemodialysis, n = 287; peritoneal dialysis, n = 42) and 24.5% were non-dialysis (CKD stage 4, n = 69; CKD stage 5, n = 38). Average symptom reported was 13.01 ± 7.67. Fatigue and pain were common and burdensome across all symptom dimensions.Approximately one-third of participants experienced sexual symptoms. Dialysis patients reported greater symptom burden, especially patients on haemodialysis. Haemodialysis treatment, older age and being female were independently associated with greater total symptom burden. In conclusion, symptom burden is high among advanced stages of CKD, particularly among those receiving dialysis. Although fatigue, pain and sexual dysfunction are key contributors to symptom burden in CKD, these symptoms are often under-recognised and warrant routine assessment. The CKD-SBI offers a valuable tool to assess symptom burden, leading to the commencement of timely and appropriate interventions.

Palliative care challenges : implications for nurses' practice in renal settings

The very act of withdrawing dialysis places renal nurses in a unique practice setting requiring a sudden shift in care delivery from one of providing Ife-sustaining, active treatment to that of palliation. The impact of this act on the renal nurse remains largely invisible. Minimal research has been conducted that explores the significant issues and challenges that exist for renal nurses in the delivery of palliation following withdrawal of dialysis treatment. This paper attempts to highlight the issues and challenges that do exist for renal nurses in providing palliation and the subsequent lack of available research knowledge to inform practice in the renal setting. It recommends further research be conducted into the renal setting so as to inform the development of appropriate education to support renal nurses practice in the future.

Unique X-linked familial FSGS with co-segregating heart block disorder is associated with a mutation in the NXF5 gene

Focal segmental glomerulosclerosis (FSGS) is the consequence of a disease process that attacks the kidney's filtering system, causing serious scarring. More than half of FSGS patients develop chronic kidney failure within 10 years, ultimately requiring dialysis or renal transplantation. There are currently several genes known to cause the hereditary forms of FSGS (ACTN4, TRPC6, CD2AP, INF2, MYO1E and NPHS2). This study involves a large, unique, multigenerational Australian pedigree in which FSGS co-segregates with progressive heart block with apparent X-linked recessive inheritance. Through a classical combined approach of linkage and haplotype analysis, we identified a 21.19 cM interval implicated on the X chromosome. We then used a whole exome sequencing approach to identify two mutated genes, NXF5 and ALG13, which are located within this linkage interval. The two mutations NXF5-R113W and ALG13-T141L segregated perfectly with the disease phenotype in the pedigree and were not found in a large healthy control cohort. Analysis using bioinformatics tools predicted the R113W mutation in the NXF5 gene to be deleterious and cellular studies support a role in the stability and localization of the protein suggesting a causative role of this mutation in these co-morbid disorders. Further studies are now required to determine the functional consequence of these novel mutations to development of FSGS and heart block in this pedigree and to determine whether these mutations have implications for more common forms of these diseases in the general population.

The effectiveness of interventions which promote self-management for people with End Stage Renal Disease undergoing haemodialysis

Review Objectives: This systematic review seeks to establish what best practice is for: Interventions which promote self-management for patients with End Stage Renal Disease (ERSD) undergoing Haemodialysis. Review questions: 1) Do education interventions improve self-management for patients with end stage renal disease? 2) Do psychosocial interventions such as Cognitive Behavioural Therapy, behavioural therapy or other counselling therapies and social support, improve self-management for patients with end stage renal disease? Criteria for considering studies for this review: Types of participants: This component of the review will consider studies with: • All adults over the age of 18 years • Patients with end stage renal disease • Undergoing haemodialysis Types of interventions/Phenomena of Interest: All studies evaluating the following interventions will be considered for inclusion in the review such as: Interventions which promote self management including: • Education interventions. • Psychosocial interventions such as cognitive behavioural therapy and other behavioural therapies, counselling and social support. Types of outcome measures/anticipated outcomes: This component of the review will consider studies that include the following outcomes: • Adherence with haemodialysis treatment, • Depression and/or anxiety, • Quality of life, • Carer burnout, • Social support • Patient satisfaction • Adverse events potentially attributable to the intervention or control treatment • Cost effectiveness of home haemodialysis Keywords chronic kidney failure; renal failure; end stage renal disease; chronic kidney disease

The effectiveness of health education using the teach-back method on adherence and self-management in chronic disease: A systematic review protocol

Review question/objective What is the effect of using the teach-back method for health education to improve adherence to treatment regimen and self-management in chronic disease? Inclusion criteria Types of participants This review will consider all studies that include adult patients (aged 18 years and over) in any healthcare setting, either as inpatients (eg acute care, medical and surgical wards) or those who attend primary health care, family medical practice, general medical practice, clinics, outpatient departments, rehabilitation or community settings. Participants need to have been diagnosed as having one or more chronic diseases including heart failure, diabetes, cardiovascular disease, cancer, respiratory disease, asthma, chronic obstructive pulmonary disease, chronic kidney disease, arthritis, epilepsy or a mental health condition. Studies that include seriously ill patients, and/or those who have impairments in verbal communication and cognitive function will be excluded. Types of intervention This review will consider studies that investigate the use of the teach-back method alone or in combination with other supporting education, either in routine or research intervention education programs; regardless of how long the programs were and whether or not a follow-up was conducted. The intervention could be delivered by any healthcare professional. The comparator will be any health education for chronic disease that does not include the teach-back method. Types of outcomes Primary outcomes of interest are disease-specific knowledge, adherence, and self-management knowledge, behavior and skills measured using patient report, nursing observation or validated measurement scales. Secondary outcomes include knowledge retention, self-efficacy, hospital readmission, hospitalization, and quality of life, also measured using patient report, nursing observation, hospital records or validated measurement scales.

Bcl-2 genes and growth factors in the pathology of ischaemic acute renal failure

For the past decade, an attempt has been made by many research groups to define the roles of the growing number of Bcl-2 gene family proteins in the apoptotic process. The Bcl-2 family consists of pro-apoptotic (or cell death) and anti-apoptotic (or cell survival) genes and it is the balance in expression between these gene lineages that may determine the death or survival of a cell. The majority of studies have analysed the role/s of the Bcl-2 genes in cancer development. Equally important is their role in normal tissue development, homeostasis and non-cancer disease states. Bcl-2 is crucial for normal development in the kidney, with a deficiency in Bcl-2 producing such malformation that renal failure and death result. As a corollary, its role in renal disease states in the adult has been sought. Ischaemia is one of the most common causes of both acute and chronic renal failure. The section of the kidney that is most susceptible to ischaemic damage is the outer zone of the outer medulla. Within this zone the proximal tubules are most sensitive and often die by necrosis or desquamate. In the distal nephron, apoptosis is the more common form of cell death. Recent results from our laboratory have indicated that ischaemia-induced acute renal failure is associated with up-regulation of two anti-apoptotic Bcl-2 proteins (Bcl-2 and Bcl-XL) in the damaged distal tubule and occasional up-regulation of Bax in the proximal tubule. The distal tubule is a known reservoir for several growth factors important to renal growth and repair, such as insulin-like growth factor-1 (IGF-1) and epidermal growth factor (EGF). One of the likely possibilities for the anti-cell death action of the Bcl-2 genes is that the protected distal cells may be able to produce growth factors that have a further reparative or protective role via an autocrine mechanism in the distal segment and a paracrine mechanism in the proximal cells. Both EGF and IGF-1 are also up-regulated in the surviving distal tubules and are detected in the surviving proximal tubules, where these growth factors are not usually synthesized. As a result, we have been using in vitro methods to test: (i) the relative sensitivities of renal distal and proximal epithelial cell populations to injury caused by mechanisms known to act in ischaemia-reperfusion; (ii) whether a Bcl-2 anti-apoptotic mechanism acts in these cells; and (iii) whether an autocrine and/or paracrine growth factor mechanism is initiated. The following review discusses the background to these studies as well as some of our preliminary results.

Meeting the nutrition challenge of stage 3 renal failure : considerations for nursing practice

Self-care management is needed for effective management of chronic kidney disease. The main aim for treatment or management of chronic kidney disease is to delay the worsening of kidney function, and to prevent or to manage the co-morbidities. Selfcare management is not easy, and patients will face many challenges, especially when they cannot get use to the new treatment plan. One of the challenges they face is dietary restriction, which is a very important aspect in any self-care management programme. Chronic kidney disease patients require a low-protein, low-sodium, low-potassium, and low-phosphorus diet. There are several strategies patients can undertake to ensure adherence, such as self-monitoring their dietary habits and type of food consumed using a food diary; involving social support, such as family members and spouse to help them to adhere to their diet restrictions; setting goals and providing positive reinforcement when they achieved the targeted goals; joining self-management programmes to equip themselves with the necessary skills so that they can better adhere to the treatment regimes, including diet restriction; and lastly, having the knowledge about their regime, and using this knowledge to help them understand and improve their adherence.

A Mouse Model of Early-Onset Renal Failure Due to a Xanthine Dehydrogenase Nonsense Mutation

Chronic kidney disease (CKD) is characterized by renal fibrosis that can lead to end-stage renal failure, and studies have supported a strong genetic influence on the risk of developing CKD. However, investigations of the underlying molecular mechanisms are hampered by the lack of suitable hereditary models in animals. We therefore sought to establish hereditary mouse models for CKD and renal fibrosis by investigating mice treated with the chemical mutagen N-ethyl-N-nitrosourea, and identified a mouse with autosomal recessive renal failure, designated RENF. Three-week old RENF mice were smaller than their littermates, whereas at birth they had been of similar size. RENF mice, at 4-weeks of age, had elevated concentrations of plasma urea and creatinine, indicating renal failure, which was associated with small and irregularly shaped kidneys. Genetic studies using DNA from 10 affected mice and 91 single nucleotide polymorphisms mapped the Renf locus to a 5.8Mbp region on chromosome 17E1.3. DNA sequencing of the xanthine dehydrogenase (Xdh) gene revealed a nonsense mutation at codon 26 that co-segregated with affected RENF mice. The Xdh mutation resulted in loss of hepatic XDH and renal Cyclooxygenase-2 (COX-2) expression. XDH mutations in man cause xanthinuria with undetectable plasma uric acid levels and three RENF mice had plasma uric acid levels below the limit of detection. Histological analysis of RENF kidney sections revealed abnormal arrangement of glomeruli, intratubular casts, cellular infiltration in the interstitial space, and interstitial fibrosis. TUNEL analysis of RENF kidney sections showed extensive apoptosis predominantly affecting the tubules. Thus, we have established a mouse model for autosomal recessive early-onset renal failure due to a nonsense mutation in Xdh that is a model for xanthinuria in man. This mouse model could help to increase our understanding of the molecular mechanisms associated with renal fibrosis and the specific roles of XDH and uric acid. © 2012 Piret et al.

Integrated Chronic Disease Nurse Practitioner Service: Evaluation Final Report

Executive Summary Queensland University of Technology (QUT) was contracted to conduct an evaluation of an integrated chronic disease nurse practitioner service conducted at Meadowbrook Primary Care Practice. This evaluation is a collaborative project with nurse practitioners (NP) from Logan Hospital. The integrated chronic disease nurse practitioner service is an outpatient clinic for patients with two or more chronic diseases, including chronic kidney disease (CKD), heart failure (HF), diabetes (type I or II). This document reports on the first 12 months of the service (4th June, 2014 to 25th May, 2015). During this period: • 55 patients attended the NP clinic with 278 occasions of service provided • Almost all (95.7%) patients attended their scheduled appointments (only 4.3% did not attend an appointment) • Since attending the NP clinic, the majority of patients (77.6%) had no emergency department visits related to their chronic disease; only 3 required hospital admission. • 3 patients under the service were managed with Hospital In the Home which avoided more than 25 hospital bed days • 41 patients consented to join a prospective cohort study of patient-reported outcomes and patient satisfaction • 14 patient interviews and 3 stakeholder focus groups were also conducted to provide feedback on their perceptions of the NP-led service innovation. The report concludes with seven recommendations.

Developing a model of care to improve the health and well-being for Indigenous people receiving renal dialysis treatment

The high levels of end-stage renal disease among Indigenous Australians, particularly in remote areas of the country, are a serious public health concern. The magnitude of the problem is reflected in figures from the Australian and New Zealand Transplant and Dialysis Registry that show that Indigenous Australians experience end-stage renal disease at a rate almost 9–10 times higher than other non-Indigenous Australians. A majority of Indigenous Australians have to relocate to receive appropriate renal dialysis treatment. In some Australian states, renal treatment is based on self-care dialysis which allows those Indigenous Australians to be treated back in their community. Evidence clearly shows that reuniting renal patients with community and family improves overall health and well-being for those Indigenous Australians. With the appropriate resources, training, and support, self-care management of renal dialysis treatment is an effective way for Indigenous people with end-stage renal failure to be treated at home. In this context, the study was used to gain insight and further understanding of the impact that end-stage renal disease and renal dialysis treatment has had on the lives of Indigenous community members. The study findings are from 14 individually interviewed people from South East Queensland. Data from the interviews were analysed using a combination of thematic and content analysis. The study methodology was based on qualitative data principles where the Indigenous community members were able to share their experiences and journeys living with end-stage renal disease. Many of the experiences and understanding closely relate to the renal disease pattern and the treatment with other outside influences, such as social, cultural, and environmental influences, all having an equal impact. Each community member’s experience with end-stage renal disease is unique; some manage with family and medical support, while others try to manage independently. From the study, community members who managed their renal dialysis treatment independently were much more aware of their renal health status. The study provides recommendations towards a model of care to improve the health and well-being is based on self-care and self-determination principles.

Caveat Anicula! Beware of the Quiet Little Old Ladies : Demographics, Pharmacotherapy, Survival and Readmissions in a 10 Year Cohort of Heart Failure Patients with Preserved Systolic Function

Objective--To determine whether heart failure with preserved systolic function (HFPSF) has different natural history from left ventricular systolic dysfunction (LVSD). Design and setting--A retrospective analysis of 10 years of data (for patients admitted between 1 July 1994 and 30 June 2004, and with a study census date of 30 June 2005) routinely collected as part of clinical practice in a large tertiary referral hospital.Main outcome measures-- Sociodemographic characteristics, diagnostic features, comorbid conditions, pharmacotherapies, readmission rates and survival.Results--Of the 2961 patients admitted with chronic heart failure, 753 had echocardiograms available for this analysis. Of these, 189 (25%) had normal left ventricular size and systolic function. In comparison to patients with LVSD, those with HFPSF were more often female (62.4% v 38.5%; P = 0.001), had less social support, and were more likely to live in nursing homes (17.9% v 7.6%; P < 0.001), and had a greater prevalence of renal impairment (86.7% v 6.2%; P = 0.004), anaemia (34.3% v 6.3%; P = 0.013) and atrial fibrillation (51.3% v 47.1%; P = 0.008), but significantly less ischaemic heart disease (53.4% v 81.2%; P = 0.001). Patients with HFPSF were less likely to be prescribed an angiotensin-converting enzyme inhibitor (61.9% v 72.5%; P = 0.008); carvedilol was used more frequently in LVSD (1.5% v 8.8%; P < 0.001). Readmission rates were higher in the HFPSF group (median, 2 v 1.5 admissions; P = 0.032), particularly for malignancy (4.2% v 1.8%; P < 0.001) and anaemia (3.9% v 2.3%; P < 0.001). Both groups had the same poor survival rate (P = 0.912). Conclusions--Patients with HFPSF were predominantly older women with less social support and higher readmission rates for associated comorbid illnesses. We therefore propose that reduced survival in HFPSF may relate more to comorbid conditions than suboptimal cardiac management.

Which components of heart failure programs are effective? A meta-analysis of the outcomes of structured telephone support or telemonitoring as the primary component of heart failure management in 9,560 patients (Abridged Cochrane Review)

Aims--Telemonitoring (TM) and structured telephone support (STS) have the potential to deliver specialised management to more patients with chronic heart failure (CHF), but their efficacy is still to be proven. Objectives To review randomised controlled trials (RCTs) of TM or STS on all- cause mortality and all-cause and CHF-related hospitalisations in patients with CHF, as a non-invasive remote model of specialised disease-management intervention.--Methods and Results--Data sources:We searched 15 electronic databases and hand-searched bibliographies of relevant studies, systematic reviews, and meeting abstracts. Two reviewers independently extracted all data. Study eligibility and participants: We included any randomised controlled trials (RCT) comparing TM or STS to usual care of patients with CHF. Studies that included intensified management with additional home or clinic visits were excluded. Synthesis: Primary outcomes (mortality and hospitalisations) were analysed; secondary outcomes (cost, length of stay, quality of life) were tabulated.--Results: Thirty RCTs of STS and TM were identified (25 peer-reviewed publications (n=8,323) and five abstracts (n=1,482)). Of the 25 peer-reviewed studies, 11 evaluated TM (2,710 participants), 16 evaluated STS (5,613 participants) and two tested both interventions. TM reduced all-cause mortality (risk ratio (RR 0•66 [95% CI 0•54-0•81], p<0•0001) and STS showed similar trends (RR 0•88 [95% CI 0•76-1•01], p=0•08). Both TM (RR 0•79 [95% CI 0•67-0•94], p=0•008) and STS (RR 0•77 [95% CI 0•68-0•87], p<0•0001) reduced CHF-related hospitalisations. Both interventions improved quality of life, reduced costs, and were acceptable to patients. Improvements in prescribing, patient-knowledge and self-care, and functional class were observed.--Conclusion: TM and STS both appear effective interventions to improve outcomes in patients with CHF.