Fragmentation of care as a barrier to optimal ESKD management

Caring for patients with end-stage kidney disease (ESKD) in the United States is challenging, due in part to the complex epidemiology of the disease's progression as well as the ways in which care is delivered. As CKD progresses toward ESKD, the number of comorbidities increases and care involves multiple healthcare providers from multiple subspecialties. This occurs in the context of a fragmented US healthcare delivery system that is traditionally siloed by provider specialty, organization, as well as systems of payment and administration. This article describes the role of care fragmentation in the delivery of optimal ESKD care and identifies research gaps in the evidence across the continuum of care. We then consider the impact of care fragmentation on ESKD care from the patient and health system perspectives and explore opportunities for system-level interventions aimed at improving care for patients with ESKD.     

Health Related Quality of Life in Patients with Chronic Kidney Disease

Monitoring a patient’s functional status and the subjective state of well being as it related to health condition, together known as health related quality of life (HRQOL) measurements, is of particular importance in patients with chronic kidney disease (CKD) including those with end stage renal disease (ESRD). The concept of quality of life in dialysis has evolved since the inception of renal replacement therapy from simple survival to enjoying a certain level of well being. The measurement of dialysis outcomes have paralleled the improvement in the delivery of renal replacement therapy progressing from level of functioning, symptom checklists, multi dimensional well being, and moving perhaps to more patient centered quality of life. HRQOL domains have been strongly associated with objective patient outcomes. The self reported physical functioning and mental well being correlate with serum albumin and body composition measures. The ability of those on hemodialysis to self administer questionnaires is a barrier to the widespread use of multidimensional HRQOL assessment in clinical practice. However, new technologies using computer adaptive testing and item response theory may allow those questionnaires to be quickly and more efficiently administered by clinic staff. The finding of different HRQOL scores among CKD patients of different racial and ethnic backgrounds supports the need to individualize the concept of HRQOL, so that we can assess the crucial aspects of life in our patients and integrate these domains into a comprehensive plan of care. These recent findings underline the critical need to measure HRQOL and to expand the boundaries of our multidimensional tools with technology and a more patient centered concept of quality of life.Both authors contributed equally to this work.     

Models of care for co‐morbid diabetes and chronic kidney disease

Diabetes and chronic kidney disease (CKD) are two of the most prevalent co‐morbid chronic diseases in Australia. The increasing complexity of multi‐morbidity, and current gaps in health‐care delivery for people with co‐morbid diabetes and CKD, emphasize the need for better models of care for this population. Previously, proposed published models of care for co‐morbid diabetes and CKD have not been co‐designed with stake‐holders or formally evaluated. Particular components of health‐care shown to be effective in this population are interventions that: are structured, intensive and multifaceted (treating diabetes and multiple cardiovascular risk factors); involve multiple medical disciplines; improve self‐management by the patient; and upskill primary health‐care. Here we present an integrated patient‐centred model of health‐care delivery incorporating these components and co‐designed with key stake‐holders including specialist health professionals, general practitioners and Diabetes and Kidney Health Australia. The development of the model of care was informed by focus groups of patients and health‐professionals; and semi‐structured interviews of care‐givers and health professionals. Other distinctives of this model of care are routine screening for psychological morbidity; patient‐support through a phone advice line; and focused primary health‐care support in the management of diabetes and CKD. Additionally, the model of care integrates with the patient‐centred health‐care home currently being rolled out by the Australian Department of Health. This model of care will be evaluated after implementation across two tertiary health services and their primary care catchment areas.     

Models of care for chronic kidney disease: A systematic review

Aim

Chronic kidney disease (CKD) is common and presents an increasing burden to patients and health services. However, the optimal model of care for patients with CKD is unclear. We systematically reviewed the clinical effectiveness of different models of care for the management of CKD.

Methods

A comprehensive search of eight databases was undertaken for articles published from 1992 to 2016. We included randomized controlled trials that assessed any model of care in the management of adults with pre‐dialysis CKD, reporting renal, cardiovascular, mortality and other outcomes. Data extraction and quality assessment was carried out independently by two authors.

Results

Results were summarized narratively. Nine articles (seven studies) were included. Four models of care were identified: nurse‐led, multidisciplinary specialist team, pharmacist‐led and self‐management. Nurse and pharmacist‐led care reported improved rates of prescribing of drugs relevant to CKD. Heterogeneity was high between studies and all studies were at high risk of bias. Nurse‐led care and multidisciplinary specialist care were associated with small improvements in blood pressure control.

Conclusion

Evidence of long term improvements in renal, cardiovascular or mortality endpoints was limited by short follow up. We found little published evidence about the effectiveness of different models of care to guide best practice for service design, although there was some evidence that models of care where health professionals deliver care according to a structured protocol or guideline may improve adherence to treatment targets.     

The ON TRAC model for transitional care of adolescents

This article describes the framework and clinical pathway for ON TRAC (Taking Responsibility for Adolescent/Adult Care), a model of transition care for adolescents with chronic health conditions, as applied to pediatric transplant transition. This model was developed in 1998 at Children's and Women's Health Centre of British Columbia; it provides a multidisciplinary approach to developmentally appropriate transition planning and skill building. The model is youth focused and family centered, and includes stages of transition care on the basis of the developmental stages and capabilities of adolescents. Important considerations for healthcare providers, specific tools for use in clinical settings, and case studies illustrate the use of the ON TRAC model in a pediatric transplant clinic. The ultimate goal of transition in the ON TRAC model is for all adolescents to reach their attainable levels of independence, self-sufficiency, and self-worth while transferring safely and securely into adult healthcare services and adulthood.     

Epidemiology of end-stage kidney disease

End-stage kidney disease (ESKD) is a common and morbid disease that affects patients’ quality and length of life, representing a large portion of health care expenditure in the United States. These patients commonly have associated diabetes and cardiovascular disease, with high rates of cardiovascular-related death. Management of ESKD requires renal replacement therapy via dialysis or transplantation. While transplantation provides the greatest improvement in survival and quality of life, the vast majority of patients are treated initially with hemodialysis. However, outcomes differ significantly among patient populations. Barriers in access to care have particularly affected at-risk populations, such as Black and Hispanic patients. These patients receive less pre-ESKD nephrology care, are less likely to initiate dialysis with a fistula, and wait longer for transplants—even in pediatric populations. Priorities for ESKD care moving into the future include increasing access to nephrology care in underprivileged populations, providing patient-centered care based on each patient’s “life plan,” and focusing on team-based approaches to ESKD care. This review explores ESKD from the perspective of epidemiology, costs, vascular access, patient-reported outcomes, racial disparities, and the impact of the COVID-19 crisis.     

Achieving equity in dialysis care and outcomes: The role of policies

Socially disadvantaged persons, including racial and ethnic minorities, individuals with low incomes, homeless persons, and non-US citizens bear a disproportionate burden of end-stage kidney disease (ESKD). Inequities in nephrology referral, vascular access, use of home dialysis modalities, kidney transplantation, and mortality are prominent. Public policies, including the Patient Protection and Affordable Care Act, end-stage renal disease Quality Incentive Program, and the Prospective Payment System, were enacted to improve healthcare access and dialysis care. Here, we highlight inequities in dialysis care and outcomes, how current ESKD and other public policies may influence or exacerbate these inequities, and gaps in the literature needed to inform future policies toward achieving equity in ESKD. We give special attention to the 2019 Advancing American Kidney Health Executive Order, which has high potential to radically transform dialysis care.     

Changes in physical and psychosocial functioning among adolescents with chronic kidney disease

Little research has been published assessing changes in the functional health status of children and adolescents with chronic kidney disease (CKD). We know little about which clinical parameters influence functional status or health-related quality of life in these young people. In a prospective study using data from semi-annual visits over a 4-year period from 78 adolescents with CKD aged 11 years to 18 years, we detail the impact of several clinical measures (i.e., kidney function, albumin, hematocrit, height) on short-term changes in health-related quality of life. The 50-item Child Health Questionnaire Parent Form, a validated health-related quality of life measure in children, was used to obtain physical and psychosocial functioning summary scores at each visit. After adjustment for the variables mentioned above, the physical summary score on the Child Health Questionnaire (CHQ) declined as glomerular filtration rate declined. Increasing height was associated with a positive change in physical and psychosocial summary scores. We conclude that decline in kidney function is associated with a subsequent decline in health-related quality of life, particularly in terms of physical activity.     

Inflammation in chronic kidney disease: role in the progression of renal and cardiovascular disease

Inflammation is the response of the vasculature or tissues to various stimuli. An acute and chronic pro-inflammatory state exists in patients with chronic kidney disease (CKD), contributing substantially to morbidity and mortality. There are many mediators of inflammation in adults with CKD and end-stage kidney disease (ESKD), including hypoalbuminemia/malnutrition, atherosclerosis, advanced oxidation protein products, the peroxisome proliferators-activated receptor, leptin, the thiobarbituric acid reactive system, asymmetric dimethyl arginine, iron, fetuin-A, and cytokines. Inflammation contributes to the progression of CKD by inducing the release of cytokines and the increased production and activity of adhesion molecules, which together contribute to T cell adhesion and migration into the interstitium, subsequently attracting pro-fibrotic factors. Inflammation in CKD also causes mortality from cardiovascular disease by contributing to the development of vascular calcifications and endothelial dysfunction. Similar to the situation in adults, cardiovascular disease in pediatric CKD is linked to inflammation: abnormal left ventricular wall geometry is positively associated with markers of inflammation. This review focuses on traditional and novel mediators of inflammation in CKD and ESKD, and the deleterious effect inflammation has on the progression of renal and cardiovascular disease.     

Chronic kidney disease in the general population

End-stage kidney disease (ESKD), defined as the need for dialysis, receipt of a transplant, or death from chronic kidney failure, generally affects fewer than 1% of the population. However ESKD is the end result of chronic kidney disease (CKD), a widely prevalent but often silent condition with elevated risks of cardiovascular morbidity and mortality and a range of metabolic complications. A recently devised classification of CKD has facilitated prevalence estimates that reveal an "iceberg" of CKD in the community, of which dialysis and transplant patients are the tip. Hypertension, smoking, hypercholesterolemia, and obesity, currently among the World Health Organization's (WHO's) top 10 global health risks, are strongly associated with CKD. The factors, together with increasing diabetes prevalence and an aging population, will result in significant global increases in CKD and ESKD patients. Treatments now available effectively reduce the rate of progression of CKD and the extent of comorbid conditions and complications. The challenges are (1) to intervene effectively to reduce the excess burden of cardiovascular morbidity and mortality associated with CKD, (2) to identify those at greatest risk for ESKD and intervene effectively to prevent progression of early CKD, and (3) to ultimately introduce cost-effective primary prevention to reduce the overall burden of CKD. The vast majority of the global CKD burden will be in developing countries, and policy responses must be both practical and sustainable in these settings.     

Supportive and palliative care for metastatic breast cancer: Resource allocations in low- and middle-income countries. A Breast Health Global Initiative 2013 consensus statement

Many women diagnosed with breast cancer in low- and middle-income countries (LMICs) present with advanced-stage disease. While cure is not a realistic outcome, site-specific interventions, supportive care, and palliative care can achieve meaningful outcomes and improve quality of life.As part of the 5th Breast Health Global Initiative (BHGI) Global Summit, an expert international panel identified thirteen key resource recommendations for supportive and palliative care for metastatic breast cancer. The recommendations are presented in three resource-stratified tables: health system resource allocations, resource allocations for organ-based metastatic breast cancer, and resource allocations for palliative care. These tables illustrate how health systems can provide supportive and palliative care services for patients at a basic level of available resources, and incrementally add services as more resources become available.The health systems table includes health professional education, patient and family education, palliative care models, and diagnostic testing. The metastatic disease management table provides recommendations for supportive care for bone, brain, liver, lung, and skin metastases as well as bowel obstruction. The third table includes the palliative care recommendations: pain management, and psychosocial and spiritual aspects of care.The panel considered pain management a priority at a basic level of resource allocation and emphasized the need for morphine to be easily available in LMICs. Regular pain assessments and the proper use of pharmacologic and non-pharmacologic interventions are recommended. Basic-level resources for psychosocial and spiritual aspects of care include health professional and patient and family education, as well as patient support, including community-based peer support.     

青少年慢性病患者过渡期护理研究进展

综述青少年慢性病患者过渡期护理相关概念、护理内容、评估工具、影响因素及干预措施,为我国青少年慢性疾病患者过渡期护理研究及实践提供参考。     

Managing older adults with CKD: individualized versus disease-based approaches

The last decade has seen the evolution and ongoing refinement of a disease-oriented approach to chronic kidney disease (CKD). Disease-oriented models of care assume a direct causal association between observed signs and symptoms and underlying disease pathophysiologic processes. Treatment plans target underlying disease mechanisms with the goal of improving disease-related outcomes. Because average glomerular filtrate rates tend to decrease with age, CKD becomes increasingly prevalent with advancing age and those who meet criteria for CKD are disproportionately elderly. However, several features of geriatric populations may limit the utility of disease-oriented models of care. In older adults, complex comorbid conditions and geriatric syndromes are common; signs and symptoms often do not reflect a single underlying pathophysiologic process; there can be substantial heterogeneity in life expectancy, functional status, and health priorities; and information about the safety and efficacy of recommended interventions often is lacking. For all these reasons, geriatricians have tended to favor an individualized patient-centered model of care over more traditional disease-based approaches. An individualized approach prioritizes patient preferences and embraces the notion that observed signs and symptoms often do not reflect a single unifying disease process and instead reflect the complex interplay between many different factors. This approach emphasizes modifiable outcomes that matter to the patient. Prognostic information related to these and other outcomes generally is used to shape rather than dictate treatment decisions. We argue that an individualized patient-centered approach to care may have more to offer than a traditional disease-based approach to CKD in many older adults.     

Potential Advantages and Limitations of Applying the Chronic Kidney Disease Classification to Kidney Transplant Recipients

The National Kidney Foundation (NKF) Kidney Disease Outcomes Quality Initiative (K/DOQI) classification of Chronic Kidney Disease (CKD) characterizes patients by their level of kidney function and includes kidney transplant recipients (KTRs). Most KTRs have stage > or = 3 CKD (estimated glomerular filtration rate < 60 mL/min/1.73 m2) and may benefit from aggressive CKD care. Recent modifications to the K/DOQI CKD classification reflect the recognition of KTRs as a unique subset of CKD patients in whom the presentation, progression and implications of CKD may vary from those in nontransplant CKD populations. Currently, there is limited information about how adopting the CKD classification in KTRs will influence clinical management and outcomes. Appropriately designed studies are needed to develop transplant-specific CKD treatment recommendations, and to ensure patient, health provider and payer acceptance of the continued need for aggressive CKD care after transplantation. Education and implementation strategies will be required to ensure appropriate integration of the CKD classification and treatment guidelines into existing posttransplant care programs. The CKD classification thus represents an exciting potential strategy to improve clinical outcomes that should be adopted, further studied and modified to incorporate considerations unique to KTRs.     

儿童至成人过渡期癫痫青少年参与健康照护意向及影响因素研究

目的调查儿童至成人过渡期的癫痫患者参与健康照护意向并分析其影响因素。方法采用便利抽样法,选取428例儿童至成人过渡期的癫痫青少年为研究对象,采用患者参与健康照护意向量表、社会支持量表和青少年健康相关行为自我效能量表,调查其参与健康照护意向并分析其影响因素。结果癫痫青少年参与健康照护意向总分(124.39±16.82)分,6个参与维度得分由高到低依次为:参与就医决策、参与诉求、参与质询监督、参与信息互动、参与治疗照护和参与诊疗决策。多元线性回归分析结果显示,年龄、病程、发作类型、共患疾病种类、家庭结构类型、社会支持、自我效能水平为青少年参与健康照护意向的主要影响因素(P<0.05,P<0.01)。结论癫痫青少年参与健康照护意向处于中等水平;年龄越大、病程越长和混合性发作疾病类型、流动家庭结构的青少年参与健康照护意向水平较高;提供多角度社会支持、提高自我效能,能增加癫痫青少年参与健康照的意愿,有利于该群体由儿童至成人医疗的顺利过渡。     

基于CLHLS的老年人社区养老服务需求及影响因素研究

目的分析社区现有养老服务内容以及老年人对社区养老服务的护理需求,为政府合理分配社区养老服务资源,提高老年人生活质量提供参考。方法基于2017~2018年中国老年人健康长寿影响因素追踪调查数据(CLHLS),采集有关老年人期望社区提供的养老服务需求与社区供给情况,以及老年人人口学、社会经济状况、健康状况相关数据,运用Logistic回归分析方法,探究老年人社区养老服务需求的影响因素。结果共采集到11981名老年人数据资料。75.7%的老年人希望得到保健知识教育服务,42.2%的老年人报告其社区会提供该类服务;64.3%的老年人希望得到居家护理服务,但仅10.2%的老年人报告其社区会提供此类服务;81.0%的老年人希望得到家访照顾,35.0%的老年人报告其社区会提供此类服务;67.3%老年人希望提供心理咨询服务,但仅12.1%的老年人报告其社区会提供此类服务。老年人的年龄、居住地、居住现状、经济情况及健康状况等是影响其社区养老服务需求的主要因素(P<0.05,P<0.01)。结论老年人对社区养老服务需求较大,但我国社区养老仍存在供需不平衡、城乡差距明显以及老年人生活水平差异等。社区养老应以老年人需求为导向,建立多层次、全方位、多元化的养老服务体系,提高社区养老服务质量,满足老年人社区养老服务需求。     

Assessing health status and health care utilization in adolescents with chronic kidney disease

Few validated health status measures have been assessed in children with chronic kidney disease (CKD). The objective was to assess the validity of a generic health status measure, the Child Health and Illness Profile-Adolescent Edition (CHIP-AE), in adolescents with CKD. A case-control study was performed (1) to assess scores on the CHIP-AE in adolescents with CKD compared with two control groups of age-, socioeconomic-, and gender-matched peers and (2) to compare health of patients who had chronic renal insufficiency (CRI), were on dialysis, and were posttransplantation. Seven pediatric nephrology centers recruited 113 patients (mean age, 14 yr; 39 CRI, 21 dialysis, 53 posttransplantation). Compared with 226 control subjects, patients with CKD had lower overall satisfaction with health and more restriction in activity. Positively, patients with CKD had more family involvement, better home safety and health practices, and better social problem-solving skills and were less likely to participate in risky social behaviors or socialize with peers who engaged in risky behavior. Patients who received dialysis were less physically active and experienced more physical discomfort and limitations in activities than did transplant or CRI patients. It is concluded that patients with CKD have poorer functional health status than age-matched peers. Among CKD patients, dialysis patients have the poorest functional health status. These results suggest that the CHIP-AE can be used to measure functional health status in adolescent patients with CKD.     

Palliative care in lung cancer

Advancements in the surgical and medical treatment of lung cancer have resulted in more favorable short-term survival outcomes. After initial treatment, lung cancer requires continued surveillance and follow-up for long-term side effects and possible recurrence. The integration of quality palliative care into routine clinical care of patients with lung cancer after surgical intervention is essential in preserving function and optimizing quality of life through survivorship. An interdisciplinary palliative care model can effectively link patients to the appropriate supportive care services in a timely fashion. This article describes the role of palliative care for patients with lung cancer.     

Managing the relationship between quality and cost-effective burn care

In the modern era of fiscal prudence, managing the relationship between quality health care and cost reduction is a complex and challenging task for policy makers and health care providers. Health economics is an applied field that aids in assessing the feasibility of incorporating new interventions in a certain field. Applying these tools when allocating funds for burn care is even more complicated due to the lack of clinical data regarding the cost effectiveness of different aspects in burn care. Herein we review the existing literature and summarize different approaches for achieving cost effective health care in general and in burn care specifically. Special considerations to funds allocation in burn care are also discussed.     

Chronic kidney disease care program improves quality of pre-end-stage renal disease care and reduces medical costs

Aim: Multidisciplinary care of patients with chronic kidney disease (CKD) provides better care outcomes. This study is to evaluate the effectiveness of a CKD care program on pre‐end‐stage renal disease (ESRD) care. Methods: One hundred and forty incident haemodialysis patients were classified into the CKD Care Group (n = 71) and the Nephrologist Care Group (n = 69) according to participation in the CKD care program before dialysis initiation. The ‘total observation period’ was divided into ‘6 months before dialysis’ and ‘at dialysis initiation’. Quality of pre‐ESRD care, service utilization and medical costs were evaluated and compared between groups. Results: The mean estimated glomerular filtration rates at dialysis initiation were low in both groups; but the levels of haematocrit and serum albumin of the CKD Care Group were significantly higher. The percentages of patients initiating dialysis with created vascular access, without insertion of double‐lumen catheter and without hospitalization were 57.7%, 50.7% and 40.8%, respectively, in the CKD Care Group, and 37.7%, 29.0% and 18.8% in the Nephrologist Care Group (P < 0.001). Participation in the CKD care program, though with higher costs during the 6 months before dialysis ($US1428 ± 2049 vs US$675 ± 962/patient, P < 0.001), was significantly associated with lower medical costs at dialysis initiation ($US942 ± 1941 vs $US2410 ± 2481/patient, P < 0.001) and for the total period of observation ($US2674 ± 2780 vs $US3872 ± 3270/patient, P = 0.009). The cost‐saving effect came through the early preparation of vascular access and the lack of hospitalization at dialysis initiation. Conclusion: CKD care programs significantly improve quality of pre‐ESRD care, decrease service utilization and save medical costs.