Understanding health decisions using critical realism: home-dialysis decision-making during chronic kidney disease

Understanding health decisions using critical realism: home-dialysis decision-making during chronic kidney disease This paper examines home-dialysis decision making in people with Chronic Kidney Disease (CKD) from the perspective of critical realism. CKD programmes focus on patient education for self-management to delay the progression of kidney disease and the preparation and support for renal replacement therapy e.g.) dialysis and transplantation. Home-dialysis has clear health, societal and economic benefits yet service usage is low despite efforts to realign resources and educate individuals. Current research on the determinants of modality selection is superficial and insufficient to capture the complexities embedded in the process of dialysis modality selection. Predictors of home-dialysis selection and the effect of chronic kidney disease educational programmes provide a limited explanation of this experience. A re-conceptualization of the problem is required in order to fully understand this process. The epistemology and ontology of critical realism guides our knowledge and methodology particularly suited for examination of these complexities. This approach examines the deeper mechanisms and wider determinants associated with modality decision making, specifically who chooses home dialysis and under what circumstances. Until more is known regarding dialysis modality decision making service usage of home dialysis will remain low as interventions will be based on inadequate epistemology.     

Challenges of self-management when living with multiple chronic conditions: Systematic review of the qualitative literature

ObjectiveTo explore the perspectives of patients who live with multiple chronic conditions as they relate to the challenges of self-management.SynthesisImportant themes raised by people living with multiple chronic conditions related to their ability to self-manage included living with undesirable physical and emotional symptoms, with pain and depression highlighted. Issues with conflicting knowledge, access to care, and communication with health care providers were raised. The use of cognitive strategies, including reframing, prioritizing, and changing beliefs, was reported to improve people’s ability to self-manage their multiple chronic conditions.ConclusionThis study provides a unique view into patients’ perspectives of living with multiple chronic conditions, which are clearly linked to common functional challenges as opposed to specific diseases. Future policy and programming in self-management support should be better aligned with patients’ perspectives on living with multiple chronic conditions. This might be achieved by ensuring a more patient-centred approach is adopted by providers and health service organizations.     

Obesity and coronary artery disease risk in Native Americans

With the aging of the US population and the increase in hypertension, diabetes mellitus, and obesity, the prevalence of chronic kidney disease (CKD) is increasing in the United States. Its prevalence rate has risen to 13.1% of the US population. Patients with CKD experience poor outcomes and have high health care costs. Chronic kidney disease is also a major cardiovascular disease risk factor. In fact, most people with CKD die of heart disease before they progress to end-stage renal disease. The National Kidney Foundation has produced evidencebased guidelines known as the Kidney Disease Outcomes Quality Initiative (KDOQI). These guidelines outline many things that the primary care physician can do to delay the progression of CKD, and to arrange for early referral for the prevention of future complications. However, there is limited knowledge and uptake of these guidelines because of their length and and complexity. Patients with CKD risk factors, hypertension, diabetes mellitus, cardiovascular disease, a family history of CKD, and those older than 60 years should be screened using 2 tests: 1) the estimated glomerular filtration rate and 2) the urinary albumin-creatinine ratio. These tests allow the diagnosis and stratification of CKD into 5 stages. This article synthesizes the key evidence-based behaviors and clinical action plan that primary care physicians can implement to treat CKD and its complications.     

Evaluating the Illness Perception Questionnaire on patients with chronic kidney disease in Sweden

Scand J Caring Sci; 2012; 26; 474–484 Evaluating the illness perception questionnaire on patients with chronic kidney disease in Sweden Background: The Revised Illness Perception Questionnaire (IPQ‐R) measures illness perception according to the Common Sense Model of Self‐Regulation. Illness perception relates to coping, health management, treatment outcomes and health‐related quality of life. IPQ‐R has been used in many contexts. However, there is yet no Swedish version evaluated for validity, reliability and usability in the context of a Swedish, adult population with Chronic Kidney Disease (CKD). Objectives: To evaluate usability and psychometric properties of a Swedish translation of IPQ‐R on a group of adults in different stages of CKD. Methods:  Usability evaluation was carried out through cognitive interviews and psychometrics was assessed by internal consistency, test‐retest, inter‐correlations, correlations to health‐related quality of life and coping and testing for concurrent validity. Results: Content validity was strongly supported, but an uncertainty assessing symptoms attributed to CKD was indicated. All dimensions showed internal consistency, except the treatment control dimension. The IPQ‐R showed good stability over time except the personal control dimension. Most IPQ‐R dimensions distinguished illness representations between groups of different disease stages and symptom burden. The most supported IPQ‐R dimensions for inter‐correlations and convergent validity were identity, timeline cyclical, consequences and emotional representations. Conclusions: The evaluation of the Swedish version of IPQ‐R on patients with CKD showed support for construct validity, except for the dimensions controllability, illness coherence and timeline, which were less supported. These dimensions should therefore be interpreted with care in CKD patients. There is a need to capture uncertainty regarding illness identity. IPQ‐R should be interpreted with care in earlier stages of CKD or if few symptoms are reported. IPQ‐R may be applicable and useful as a tool in nursing practice to support healthy behaviour as well as assessing clinical interventions in patients with CKD.     

Chronic kidney disease and cardiovascular disease--using the ANNA Standards and Practice Guidelines to improve care. Part 1: the epidemiology of chronic kidney disease: the risk factors and complications that contribute to cardiovascular disease.

Recent National Kidney Foundation Kidney Disease Outcome Quality Initiative Guidelines for cardiovascular disease recommend that patients with chronic kidney disease be considered at highest risk for development of cardiovascular disease and that cardiac risk factor reduction begin with diagnosis of chronic kidney disease. Risk factors for cardiovascular disease in patients with chronic kidney disease include both traditional and nontraditional renal-related cardiac risk factors. The ANNA Nephrology Nursing Standards of Practice and Guidelines for Care can provide the foundation for planning care to patients with CKD and not only slow the progression of CKD but reduce exposure to cardiac risk factors. This article, on the epidemiology of chronic kidney disease and the risk factors and complications that contribute to cardiovascular disease, is the first in a series of three articles on the risk factors and complications related to chronic kidney disease and its impact on cardiovascular disease.     

Mineral metabolism disturbances in patients with chronic kidney disease

BACKGROUND: Kidney disease, especially chronic kidney disease (CKD), is a worldwide public health problem with serious adverse health consequences for affected individuals. Secondary hyperparathyroidism, a disorder characterized by elevated serum parathyroid hormone levels, and alteration of calcium and phosphorus homeostasis are common metabolic complications of CKD that may impact cardiovascular health. MATERIALS AND METHODS: Here, we systematically review published reports from recent observational studies and clinical trials that examine markers of altered mineral metabolism and clinical outcomes in patients with CKD. RESULTS: Mineral metabolism disturbances begin early during the course of chronic kidney disease, and are associated with cardiovascular disease and mortality in observational studies. Vascular calcification is one plausible mechanism connecting renal-related mineral metabolism with cardiovascular risk. Individual therapies to correct mineral metabolism disturbances have been associated with clinical benefit in some observational studies; clinical trials directed at more comprehensive control of this problem are warranted. CONCLUSIONS: There exists a potential to improve outcomes for patients with CKD through increased awareness of the Bone Metabolism and Disease guidelines set forth by the National Kidney Foundation-Kidney Disease Outcomes Quality Initiative. Future studies may include more aggressive therapy with a combination of agents that address vitamin D deficiency, parathyroid hormone and phosphorus excess, as well as novel agents that modulate circulating promoters and inhibitors of calcification.     

Self-management at the core of back pain care: 10 key points for clinicians

BackgroundA paradigm shift away from clinician-led management of people with chronic disorders to people playing a key role in their own care has been advocated. At the same time, good health is recognised as the ability to adapt to changing life circumstances and to self-manage. Under this paradigm, successful management of persistent back pain is not mainly about clinicians diagnosing and curing patients, but rather about a partnership where clinicians help individuals live good lives despite back pain.ObjectiveIn this paper, we discuss why there is a need for clinicians to engage in supporting self-management for people with persistent back pain and which actions clinicians can take to integrate self-management support in their care for people with back pain.DiscussionPeople with low back pain (LBP) self-manage their pain most of the time. Therefore, clinicians and health systems should empower them to do it well and provide knowledge and skills to make good decisions related to LBP and general health. Self-management does not mean that people are alone and without health care, rather it empowers people to know when to consult for diagnostic assessment, symptom relief, or advice. A shift in health care paradigm and clinicians’ roles is not only challenging for individual clinicians, it requires organisational support in clinical settings and health systems. Currently, there is no clear evidence showing how exactly LBP self-management is most effectively supported in clinical practice, but core elements have been identified that involve working with cognitions related to pain, behaviour change, and patient autonomy.     

K/DOQI gets to the heart of managing dyslipidemias in patients with CKD.

There is a wealth of data in the general population regarding interventions to reduce cardiovascular risk. Unfortunately, most of these studies exclude patients with chronic kidney disease. As a result, the lack of CKD specific data has resulted in a lack of attention and intervention. With the epidemic levels of cardiovascular disease in patients on dialysis, the NKF has established these K/DOQI guidelines in an effort to get to the "heart" of dyslipidemias and ultimately to assist the health care team in their effort to improve CKD patient outcomes. In addition, the National Kidney Foundation currently has draft K/DOQI Clinical Practice Guidelines for Cardiovascular Disease in the public review process. These new guidelines will elaborate on areas not covered in the dyslipidemia guidelines.     

Supporting self-management in patients with chronic illness

Support of patient self-management is a key component of effective chronic illness care and improved patient outcomes. Self-management support goes beyond traditional knowledge-based patient education to include processes that develop patient problem-solving skills, improve self-efficacy, and support application of knowledge in real-life situations that matter to patients. This approach also encompasses system-focused changes in the primary care environment. Family physicians can support patient self-management by structuring patient-physician interactions to identify problems from the patient perspective, making office environment changes that remove self-management barriers, and providing education individually and through available community self-management resources. The emerging evidence supports the implementation of practice strategies that are conducive to patient self-management and improved patient outcomes among chronically ill patients.     

Uremic syndrome and end-stage renal disease: physical manifestations and beyond

PURPOSE: This review summarizes data concerning the incidence, definition, pathophysiology, and physical manifestations of patients with uremic syndrome. DATA SOURCES: Data sources utilized in writing this article included the National Kidney Foundation Guidelines, the United States Renal Data System, textbooks of medicine and pathophysiology, and medical care and nursing journals. CONCLUSIONS: Early identification of kidney disease in the early stages is essential to preserving kidney function for as long as possible. The progression of chronic kidney disease (CKD) and the manifestations of uremic syndrome leading to end-stage renal failure (ESRF) are often not addressed in the literature for nurse practitioners. IMPLICATIONS FOR PRACTICE: Patients with progressing CKD and ESRF often present in the primary care setting for treatment of acute and chronic conditions not pertaining to their renal status (e.g., viral upper respiratory infections, diabetes, hypertension). Nurse practitioners need to be knowledgeable about the subtle early presentation of uremic syndrome and ESRF, risk factors for kidney disease, assessment tools to make the diagnosis and stage the disease, treatment of this disease, as well as psychological, economic, and the social impact that ESRF imposes on individuals, families, communities, and the healthcare system as a whole when the chronic disease has progressed to end stage.     

Factors associated with good self-management in older adults with a schizophrenic disorder compared with older adults with physical illnesses

The number of older people living with a schizophrenic disorder (SD) is increasing yet little attention paid has been paid to the needs of this population relative to people with other chronic illnesses. In order to achieve optimal functioning people with a SD need to manage their illness and its impact; therefore, this study set out to determine the factors associated with self-management in this population. The illness management of people over 50 years of age and living with schizophrenia (n= 84) was compared with their peers who were diagnosed with a chronic physical illness (n= 216). Participants completed a survey that included an illness management inventory, self-rated health and sense of coherence. The results demonstrated that participants with a SD had lower illness management levels, particularly for understanding their symptoms and taking appropriate actions in relation to health care. Poor self-rated health and the presence of comorbid conditions had a pervasive negative effect on self-management factors in the SD group, whereas being married, having a greater sense of coherence and being voluntary to treatment had a positive effect. Nurses need to develop strategies to address general health and self-management in older adults living with a SD.     

An online approach to providing chronic illness self-management information

The purpose of this article was to describe an online approach to providing chronic illness self-management information to rural women with chronic illness. To self-manage chronic illness, individuals require information about their conditions. For those in rural areas who have limited access to health services, computer-based interventions are a means of providing this information. Participants were randomly assigned either to an 11-week computer intervention in which they completed nine online self-study health teaching units related to self-management, or to a control group. The health teaching units were positively rated as being helpful in managing their chronic illnesses, with scores ranging from 4.09 to 4.84 on a six-point scale. Perceptions of computer skills increased significantly for the intervention group, with no increase in the control group. Computer-based programs can be an effective approach to providing health information to rural women with chronic conditions that will assist them in their self-management efforts.     

Questionnaire instrument to assess knowledge of chronic kidney disease clinical practice guidelines among internal medicine residents

Introduction  The National Kidney Foundation published Kidney Disease Outcomes Quality Initiative guidelines that recommend early detection and management of chronic kidney disease (CKD) and timely referral to a nephrologist. Many patients with CKD are seen by primary care doctors who maybe less experienced than a nephrologist to offer optimal early CKD care. It is not known whether postgraduate training adequately prepares a future internist in CKD management.
Methods  We developed a 15-item questionnaire instrument to assess knowledge of CKD guidelines among internal medicine residents in USA using an online survey programme. We studied the validity and reliability measures of our instrument.
Results  The survey was completed by 166 PGY1 (postgraduate year one), 187 PGY2 and 126 PGY3. The questionnaire tested various aspects of CKD including definition, classification, identification of risk factors, laboratory evaluation, development of clinical action plan, identification of complications, anaemia and bone and mineral disorder, referral to a nephrologist and medication use. Validity was supported by the use of official guidelines and an expert panel of nephrologists to develop content and improvement in mean test performance with increasing level of training (PGY1 59.2 ± 13.5%, PGY2 62.6 ± 12.3% and PGY3 64.3 ± 12.2%; P  = 0.002). The reliability coefficient for the questionnaire instrument (Cronbach's α) was 0.69.
Conclusion  Our brief questionnaire is a valid and reliable instrument to assess knowledge of CKD guidelines among internal medicine residents and identify specific gaps for improvement.     

Africa and nephrology: the forgotten continent

Chronic kidney disease (CKD) is not a priority on the health agenda in Africa and it remains a 'forgotten condition'. Most people in Africa do not have access to dialysis or transplantation, if they develop end-stage renal disease. Cardiovascular disease (CVD) and HIV/AIDS enjoy a more prominent profile as a serious cause of morbidity and mortality, but despite the clear links of CVD and HIV with CKD, there has been a failure to highlight the link between chronic illnesses like diabetes, hypertension and HIV/AIDS and both CKD and CVD. Management of chronic illnesses requires a functioning public health system and good links between primary and specialist care. Despite calls to establish CKD prevention programs, there are very few in Africa and they have not been integrated into existing primary healthcare systems. This is aggravated by shortages of both financial and human resources and failure to strengthen health systems managing chronic diseases. The result is that very few people in Africa with CKD are managed early or receive dialysis or transplantation. This article investigates some of the issues impacting on the recognition of CKD as a public health issue, and will also consider some factors which could make CKD a more prominent chronic disease in Africa.     

Self-management in older patients with chronic illness

Chronic illness causes the majority of disease burden and health costs in developed countries; however, this could be substantially reduced by optimal patient self-management. This study examined the levels of self-management in patients (n = 300) with chronic illness (chronic heart failure, chronic respiratory disease, Parkinson's disease and chronic schizophrenia) of moderate severity who had experienced an illness exacerbation in the last month. Patient's perceptions of self-efficacy in relation to their self-management and their sense of coherence were also assessed at baseline and 1 month later. No changes occurred in self-perceptions or self-management from baseline to follow-up. Patients at risk of poor self-management included people with low self-efficacy, poor sense of coherence, older age and a primary diagnosis of chronic schizophrenia. As self-efficacy is the only predictor known to be amenable to intervention, self-efficacy enhancing support should be promoted.     

Implementation of Cluster-Based Management Strategies for Patients With Chronic Kidney Disease

Chronic kidney disease is a critical public health problem and health economic burden. This research adopted the clustering analysis method, which was used to divide 259 patients into 3 subgroups of patients, based on the situational leadership management. The goal was to discover the needs for patient management and a self-management support strategy applied to clinical care. At the same time, the aim was to constantly improve the ability of self-management for patients with chronic kidney disease to improve their physical and mental health, to realize the diversification of slow disease management, and customization of care.     

短信平台教育在慢性肾脏病患者自我管理中的应用

目的通过短信平台定期向慢性肾脏病患者发送自我管理及健康教育内容,以增强患者的自我效能、改善其自我管理能力。方法选择2011年11月至2012年4月瑞金医院肾脏内科诊断为慢性肾脏病1～4期且能独立查看手机短信的患者108例,按随机数字表法分为两组:短信对照组患者接受常规健康指导;短信干预组患者出院后,护士通过医院短信平台向患者手机定期发送短信,内容主要为自我管理及健康教育内容;比较两组患者出院后3个月的自我管理行为及自我效能。结果出院前,两组患者的自我管理行为及自我效能水平差异均无统计学意义(P>0.05);出院后3个月,短信干预组在运动锻炼、饮食控制、认知症状管理、与医生沟通等方面的自我管理得分及症状管理、疾病共性管理等方面的自我效能得分均高于对照组,差异有统计学意义(P<0.05)。结论短信平台教育能提高慢性肾脏病患者的自我管理能力,增强其自我效能。     

Diagnosis: Chronic kidney disease, now what!

The occupational health nurse can play an important role in supporting employees with CKD and ESRD by recognizing risk factors such as diabetes and hypertension associated with CKD. The occupational health nurse should encourage compliance with treatment regimens that retard or delay progression of kidney disease into the next stage, especially blood pressure and glucose control. When employees are in need of diagnostic testing, the occupational health nurse can describe the testing procedures such as laboratory values, ultrasounds, and biopsies, and explain the five stages of CKD. The occupational health nurse can assist employees in Stage 4 or 5 CKD in deciding on a treatment option modality that best suits their individual lifestyles, after they have seen a nephrologist and kidney patient educator. In addition, the occupational health nurse can guide employees with difficult lifestyle changes and provide support during the adjustment process. The occupational health nurse also can play a key role in facilitating and coordinating those changes with the renal social worker. Together they can explore available resources, such as the NKF, the American Association of Kidney Patients, and kidneydirections.com. See the Sidebar on pages 295 to 296 for other available resources. Kidney disease can be a devastating diagnosis. Support and education are key to a successful lifestyle transition. Employees who have CKD and work with an occupational health nurse who is informed about their disease and its stages of progression can benefit from educational processes that create informed choices to delay or retard the progression of their renal disease.     

Quality of life when living with heart failure

Heart failure is a chronic condition and consumes a huge portion of health care expenditures. Increased life expectancy combined with increasingly effective treatments for coronary artery disease and hypertension will increase the number of patients with heart failure. Efforts are aimed at helping patients better care for themselves. Nurses can design interventions that focus on education and self-management of complex treatments, spiritual support, and clinical relationships based on trust. It is essential that health care providers direct and evaluate interventions that promote improved QOL for patients and families. Nurses also need to continue to study the effects of education and self-care interventions so that care for heart failure patients is evidence based.     

The ethics of self-management preparation for chronic illness

While nearly all patients with a chronic disease must self-manage their condition to some extent, preparation for these responsibilities is infrequently assured in the USA. The result can be significant harm and the undermining of a patient's ability to take advantage of life opportunities and be productive. Agreeing to care for a patient involves a moral responsibility to see that she or he receives the essential elements of care, including the ability to manage the disease on a daily basis. The research base for the efficacy of self-management and for how patients can be prepared to assume it is sufficiently strong that health care professionals must advocate for its inclusion in the routine evidence-based care of individuals with chronic disease. Because patient education is central to nursing's philosophy and practice, the profession should play a major role in removing structural barriers to self-management preparation and assuring its provision to a high standard of quality.