Financial toxicity experienced by rural Australian families with chronic kidney disease

Aim

Chronic kidney disease (CKD) and its treatment places a financial burden on healthcare systems and households worldwide, yet little is known of its financial impact, on those who reside in rural settings. We aimed to quantify the financial impacts and out-of-pocket expenditure experienced by adult rural patients with CKD in Australia.

Methods

A web based structured survey was completed between November 2020 and January 2021. English speaking participants over 18 years of age, diagnosed with CKD stages 3–5, those receiving dialysis or with a kidney transplant, who lived in a rural location in Australia.

Results

In total 77 (69% completion rate) participated. The mean out of pocket expenses were 5056 AUD annually (excluding private health insurance costs), 78% of households experienced financial hardship with 54% classified as experiencing financial catastrophe (out-of-pocket expenditure greater than 10% of household income). Mean distances to access health services for all rural and remote classifications was greater than 50 kilometres for specialist nephrology services and greater than 300 kilometres for transplanting centres. Relocation for a period greater than 3 months to access care was experienced by 24% of participants.

Conclusion

Rural households experience considerable financial hardship due to out-of-pocket costs in accessing treatment for CKD and other health-related care, raising concerns about equity in Australia, a high-income country with universal healthcare.     

Improving the Uptake of Independent Dialysis using the Humanbecoming Theoretical Approach

Soaring healthcare costs, increasing rates of chronic illness, and an aging population have left Canada struggling to meet the growing demands for quality health care. Hospitals battle to cope with altering patient demand, higher costs, provincially imposed global budgets, fast developing technology, rigid rules, new drugs, and social inequalities that lead to poor health. Canadian population health trends have played an important role in examining innovation opportunities that can dictate terms for the effective re‐design of Canada's health system. Independent (home) dialysis is associated with cost savings and improved quality of life in comparison with hospital‐based hemodialysis treatment. Despite this, independent dialysis has failed to increase at the same rate as hospital‐based treatment for chronic kidney disease. One probable reason is the lack of healthcare providers to truly understand the patient experience of living with chronic kidney disease. Qualitative data have shown that patients living with chronic kidney disease desire independence and minimal impact to their quality of life. Parse's Humanbecoming theory has been widely accepted in nursing practice as a theoretical base in which to gain an understanding of the lived experience. The values and assumptions of the Humanbecoming theory are also congruent with patient‐centered care practice and transferable to all areas of healthcare practice and disciplines.     

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.     

Analysis of cardiovascular disease and kidney outcomes in multidisciplinary chronic kidney disease clinics: complex disease requires complex care models

PURPOSE OF REVIEW: Chronic kidney disease is recognized as being highly prevalent in the population, and associated with morbidity and mortality relative to the general population. The complexity of patients and the multiplicity of interventions required to maintain health has forced clinicians to develop different models of healthcare delivery. This publication reviews the current literature on specific interventions to reduce progression of chronic kidney disease and cardiovascular disease, and studies the examination of outcomes of patients exposed to different healthcare delivery models. Specifically we examine the rationale and outcomes of those seen in multidisciplinary clinics. RECENT FINDINGS: Current evidence supports the use of rennin-angiotensin system blockers, reduction of blood pressure and proteinuria and phosphate control. Additional less robust studies support the need for attention to anemia, hyperparathryoidism, and other more "kidney specific" risk factors. The attendance of identified chronic kidney disease patients at multidisciplinary clinics appears to improve survival once dialysis is started. Despite aggressive management, not all patients are able to meet clinical targets associated with improved outcomes. SUMMARY: The recognition of the complexity of chronic kidney disease care and the need to develop and test models of care in addition to the single interventions is a challenge for both researchers and clinicians. Current data support the use of multidisciplinary clinics in improving outcomes of referred patients. Future research will help to refine and define appropriate care models for this growing chronic kidney disease population.     

Unification of the voice of nephrology stakeholders

Kidney Care Partners is a coalition made up of representatives from the entire kidney community. Its mission is to ensure that chronic kidney disease patients receive optimal care, lead quality lives, and have ready access to dialysis care. The coalition focuses on consensus building and a community-wide cooperative effort toward developing health policy in the interest of patients. Presently, end-stage renal disease care is underfunded, and factors such as an aging population and an increase in obesity are leading to increased demands on the system. Changes in reimbursement for erythropoiesis-stimulating agents will further challenge this system. Kidney Care Partners is strongly promoting health policy through the support of the Kidney Care Quality and Education Act of 2007 (HR 1193/S 691). Among their activities is the formation of the Kidney Care Quality Initiative in an effort to bring consensus to the development of usable quality measures.     

Bridging the Gap: Innovative Approaches to Continuing Education in Rural,Remote, and Isolated First Nation Communities

Access to education, communication, and support is essential for achieving and maintaining a skilled healthcare workforce. Delivering affordable and accessible continuing education for healthcare providers in rural, remote, and isolated First Nation communities is challenging due to barriers such as geography, isolation, costs, and staff shortages. The innovative use of technology, such as on‐line courses and webinars, will be presented as a highly effective approach to increase access to continuing education for healthcare providers in these settings. A case study will be presented demonstrating how a national, not‐for‐profit health care organization has partnered with healthcare providers in these communities to support care at the local level through various technology‐based knowledge exchange activities.     

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.     

Health outcomes: Towards the accreditation of respiratory medicine departments

National health systems must ensure compliance with conditions such as equity, efficiency, quality, and transparency. Since it is the right of society to know the health outcomes of its healthcare system, our aim was to develop a proposal for the accreditation of respiratory medicine departments in terms of care, teaching, and research, measuring health outcomes using quality of care indicators. The management tools proposed in this article should be implemented to improve outcomes and help us achieve our objectives. Promoting accreditation can serve as a stimulus to improve clinical management and enable professionals to take on greater leadership roles and take action to improve outcomes in patient care.     

Everybody's business

SUMMARY:   The provision of specialist-level care for patients with chronic kidney disease in rural and remote areas is a significant challenge. There are well-recognized barriers to care in these areas but in addition there is a widely held view that the responsibility for chronic kidney disease falls to nephrologists, despite the lack of nephrologists in remote regions and the high burden of disease. This article describes how in Central Australia specialists and remote-based primary carers have adapted their usual roles and found new ways of working together to provide high-quality specialist-level care for remote chronic kidney disease patients. We are evolving a model where chronic kidney disease is no longer nephrologists' business but is everybody's business, with primary carers providing much of the routine specialist-level care.     

Prevention programmes of progressive renal disease in developing nations

Development of strategies for the early detection and prevention of non-communicable diseases, including kidney disease, is the only realistic strategy to avert an imminent global health and economic crisis and enhance equity in health care worldwide. In this article, we briefly examine the burden of non-communicable diseases, including diabetes, hypertension, cardiovascular disease and how chronic kidney disease (CKD) represents a key integrated element in the setting, even in developing countries. A possible explanation of the increasing number of people who have or are at risk to develop CKD in poor countries is also given. A survey of major screening and intervention programmes performed or ongoing globally is then presented, highlighting differences and hurdles of projects planned in developed or developing nations as well as in unprivileged communities in developed countries. Finally, some recommendations on future steps to implement prevention programmes in emerging worlds are provided.     

Commentary. The imperatives for change in the US health care payment and delivery systems are clear

Americans' spending on health care is the highest in the world, yet it does not equate with the value expected. There are disparities in access to care and a wide variation in quality. It is imperative that the US health care payment and delivery system change. The Centers for Medicare and Medicaid Services (CMS) have defined and are implementing the CMS Quality Roadmap, which includes (1) working with stakeholder collaboratives; (2) reporting to the public; (3) reforming the reimbursement systems to reward quality; (4) promoting health information technology and evidence-based medicine; and (5) increasing availability of new treatments, technologies, innovations, and information. This will fit in the value-driven health care initiative of The Department of Health and Human Services. Strategies included (1) developing quality and efficiency metrics for kidney patients, (2) measuring quality at the individual dialysis facility and nephrologist level, (3) reporting outcomes including as consumer/payer choice incentives by the public, (4) reforming the reimbursement system, (5) promoting interoperable health information technology, (6) focusing on health disparities, (7) coordinating the system of care for patients, and (8) changing treatment when indicated by new evidence.     

The burden of kidney disease: improving global outcomes

Chronic kidney disease (CKD) is a worldwide public health problem. There is an increasing incidence and prevalence of patients with kidney failure requiring replacement therapy, with poor outcomes and high cost. There is an even higher prevalence of patients in earlier stages of CKD, with adverse outcomes such as kidney failure, cardiovascular disease, and premature death. Patients at earlier stages of CKD can be detected through laboratory testing and their treatment is effective in slowing the progression to kidney failure and reducing cardiovascular events. The science and evidence-based care of these patients are universal and independent of their geographic location. There is a clear need to develop a uniform and global public health approach to the worldwide epidemic of CKD. It is to this end that a new initiative "Kidney Disease: Improving Global Outcomes" has been established. Its stated mission is "Improve the care and outcomes of kidney disease patients worldwide through promoting coordination, collaboration and integration of initiatives to develop and implement clinical practice guidelines."     

Chronic Kidney Disease in Cuba: Epidemiological Studies,Integral Medical Care,and Strategies for Prevention

The experience of the Republic of Cuba regarding epidemiological studies, integral medical care, and strategies for the prevention of chronic kidney disease is summarized in this report. Cuba has a National Program for Chronic Renal Disease, Dialysis, and Renal Transplantation. There is a national nephrology net, integrated by the Institute of Nephrology as the coordinator center, that has 47 nephrology services with a hemodialysis unit (24 of them with peritoneal dialysis unit), 9 transplantation centers, 33 organ procurement hospitals, and 5 histocompatibility laboratories.

In 2004, the incidence rate in dialysis patients was 111 pmp, and the prevalence rate was 149 pmp, demonstrating an increasing mean of 17.0% and 10.0% per year, respectively. Renal transplantation rate was 16.6 pmp. The detection, registration, and follow-up of patients with chronic kidney disease (serum creatinine ≥1.5 mg/dL or glomerular filtration rate <60 mL/min) by family doctors was 9,761 patients, 0.87 patients per 1,000 inhabitants.

In the 1980s, three population-based screening studies were performed to define the burden of chronic renal failure in different regions of Cuba. The prevalence rate was 1.1, 3.3, and 3.5 per 1,000 inhabitants, respectively. At present, another three population-based screening studies are ongoing in order to detect the chronic kidney disease in earliest stages.

The continuing medical education activities have been very useful in raising the awareness of medical doctors and the basic health staff about the threats posed by and the strategies to prevent, diagnose, and treat chronic kidney disease.     

Chronic kidney disease in Cuba: epidemiological studies, integral medical care, and strategies for prevention

The experience of the Republic of Cuba regarding epidemiological studies, integral medical care, and strategies for the prevention of chronic kidney disease is summarized in this report. Cuba has a National Program for Chronic Renal Disease, Dialysis, and Renal Transplantation. There is a national nephrology net, integrated by the Institute of Nephrology as the coordinator center, that has 47 nephrology services with a hemodialysis unit (24 of them with peritoneal dialysis unit), 9 transplantation centers, 33 organ procurement hospitals, and 5 histocompatibility laboratories.In 2004, the incidence rate in dialysis patients was 111 pmp, and the prevalence rate was 149 pmp, demonstrating an increasing mean of 17.0% and 10.0% per year, respectively. Renal transplantation rate was 16.6 pmp. The detection, registration, and follow-up of patients with chronic kidney disease (serum creatinine > or =1.5 mg/dL or glomerular filtration rate <60 mL/min) by family doctors was 9,761 patients, 0.87 patients per 1,000 inhabitants.In the 1980s, three population-based screening studies were performed to define the burden of chronic renal failure in different regions of Cuba. The prevalence rate was 1.1, 3.3, and 3.5 per 1,000 inhabitants, respectively. At present, another three population-based screening studies are ongoing in order to detect the chronic kidney disease in earliest stages.The continuing medical education activities have been very useful in raising the awareness of medical doctors and the basic health staff about the threats posed by and the strategies to prevent, diagnose, and treat chronic kidney disease.     

Using the Pharmacoepidemiology Approach to Evaluate the First-Year Posttransplantation Ambulatory Health Care Cost From the Longitudinal Health Insurance Database (2001 to 2006) in Taiwan

This research evaluated the total first-year posttransplantation ambulatory health care cost using a countrywide health claims database. We searched all health reimbursement claims of posttransplantation patients from 2001 to 2006 using the ICD-9-CM codes (V42.0, V42.1, V42.6, V42.7, V42.8) for kidney, heart, lung, liver, and other specified organ transplantations. We excluded patients undergoing transplantation surgery >12 months before 2001 or with <1 year of or irregular follow-up visits. All of the studied ambulatory care expenditures by visit files were based on the Taiwan Longitudinal Health Insurance Database (2005), which contained the claims of 1,000,000 beneficiaries who were randomly sampled from the Registry for Beneficiaries of the National Health Insurance Research Database. During this 6-year period we identified 336 transplant patients with 145 new cases having consecutive and >12 months of follow-up ambulatory visits to calculate the first-year posttransplantation cost. Among them, the first-year posttransplantation drug costs and total health care costs of the kidney, heart, lung, liver, and other organ transplantations were (m NTs) 346,396.6 ± 170,806.9 and 404,241.9 ± 182,499.1, 242,878.5 ± 128,772.7 and 302,325 ± 129,609.9, 345,792 ± 185,940.8 and 387,840.5 ± 184,244.5, 404,441.8 ± 299,311.7 and 471,631.5 ± 306,936.3 and 40,718.2 ± 50,740.2 and 67,469.8 ± 70,765.7, respectively. Drug expenditures were ∼80% of the total health care cost except for the other specified organ transplant, i.e., bone marrow, wherein they were 60%. The mean differences between drug expenditures and total costs of various organ transplants were significant (P < .01; ANOVA). Despite the first-year health care cost a the posttransplantation patient being less than dialysis costs in Taiwan, most end-stage renal disease patients are still a waiting organ donation; therefore, some candidates are seeking a transplants outside Taiwan.     

An opt-out model for kidney transplant referral: The time has come

Disparities that affect equity in access to kidney transplantation for patients with kidney failure have been well described. Many robust clinical trials have tested the effectiveness of interventions to reduce disparities and equilibrate access to kidney transplantation. Moreover, policy changes have been enacted to achieve the same aims. Despite these efforts, rates of kidney transplant waitlisting within the first year of end-stage kidney disease have remained unchanged over the past 2 decades, while incident rates of end-stage kidney disease have climbed. Because prior interventions have not durably increased transplant access, disruptive change is clearly needed. The Advancing American Kidney Health Executive Order sets bold goals to transform kidney care for patients and caregivers. In this spirit, we discuss an Opt-Out for Transplant Referral Model as a compelling solution to improve equity in access to kidney transplantation.     

Prevention of CKD in Guatemala

The rapidly growing burden of chronic kidney diseases (CKD) is a major public health problem that will stretch the healthcare system of all countries, especially those not yet industrialized. Guatemala has a population of approximately 14 million, of which 60% are younger than 20 years. It is estimated that only 35% of Guatemalan patients with CKD Stage 5 (ESRD) are diagnosed and treated. Therefore, the cost of death and disability due to CKD in this young population is particularly profound. CKD programs have to compete with many demands (often viewed in the short term as more urgent or widespread) for finite healthcare resources. FUNDANIER (Foundation for Children with Kidney Diseases) has been the instrument that facilitated changes in the Guatemalan health system, in order to establish a comprehensive Pediatric Nephrology program. FUNDANIER is the first local initiative to provide comprehensive prevention and management of kidney disease in children and adolescents in Guatemala. Through an agreement with the National Health Authorities, FUNDANIER is involved in the primary, secondary and tertiary prevention of CKD in the pediatric population. This might be a model applicable in other developing countries.