KH4L Chronic Kidney Disease Multinational Inventory

INITIATIVE

Kidney Health for Life (KH4L) is an international multistakeholder initiative with administrative support from the International Society of Nephrology (ISN). KH4L engages at the international level through an International Steering Group and at country level through a network of KH4L national steering groups. The overarching goal of the KH4L initiative is to work collaboratively with existing organizations and programs to promote early detection and effective treatment of chronic kidney disease (CKD). Through gaining an understanding of current health policies, practices and infrastructure relevant to CKD, KH4L aims to inform revisions of current policies and practices to facilitate delivery of high-quality care for patients with CKD.

The KH4L multi-stakeholder group brings together representatives of the international kidney community and associations. Having agreed on an action plan for implementation in liaison with national steering groups and an international multidisciplinary advisory group, the International Steering Group sets the main KH4L priorities. The national steering groups are drawn from 19 participating countries and consist of patients, healthcare professionals, policymakers, and other key stakeholders. The National Steering Groups set country priorities and objectives according to the international KH4L road map, and also drive local implementation.

The KH4L strategic objectives are:

To develop a systematic international inventory to evaluate present status, gaps and inequalities in care for CKD patients with an emphasis on early detection and management and to recommend ways to address gaps and inequalities in care.
To comprehensively describe models for effective CKD care, based on the results of the inventory.
To disseminate best practices to promote and facilitate improvement in national healthcare systems with regard to CKD care.
To guide national strategic initiatives for optimal care of CKD patients.

In the initial phase, as stipulated by the International Steering Group, the KH4L initiative focused on Canada, Israel and a list of countries in Europe, namely, Austria, Belgium, Denmark, Finland, France, Germany, Greece, Ireland, Italy, Netherlands, Norway, Portugal, Spain, Sweden, Switzerland, Turkey and the United Kingdom (UK).

The International Steering Group engaged the Alberta Kidney Disease Network (AKDN) to develop the systematic international inventory described above. The AKDN is a Canadian not-for-profit organization and a joint initiative of researchers from the Universities of Alberta and Calgary. This research project was supported by the International Society of Nephrology through an unrestricted grant from AbbVie.

CLICK HERE to download the KH4L Chronic Kidney Disease Multinational Inventory

INITIATIVE

KH4L Cover Kidney Health for Life (KH4L) is an international multistakeholder initiative with administrative support from the International Society of Nephrology (ISN). KH4L engages at the international level through an International Steering Group and at country level through a network of KH4L national steering groups. The overarching goal of the KH4L initiative is to work collaboratively with existing organizations and programs to promote early detection and effective treatment of chronic kidney disease (CKD). Through gaining an understanding of current health policies, practices and infrastructure relevant to CKD, KH4L aims to inform revisions of current policies and practices to facilitate delivery of high-quality care for patients with CKD.

The KH4L strategic objectives are:

To develop a systematic international inventory to evaluate present status, gaps and inequalities in care for CKD patients with an emphasis on early detection and management and to recommend ways to address gaps and inequalities in care.
To comprehensively describe models for effective CKD care, based on the results of the inventory.
To disseminate best practices to promote and facilitate improvement in national healthcare systems with regard to CKD care.
To guide national strategic initiatives for optimal care of CKD patients.

CLICK HERE to download the KH4L Chronic Kidney Disease Multinational Inventory

Executive Summary

EXECUTIVE SUMMARY

KH4L Map Image Considerable efforts have been made within individual countries to improve the care of CKD patients, though anecdotal experience suggests that these efforts, the approaches taken and the progress attained vary substantially between and within countries. Since no concerted attempt has been made until now to summarize current care practices, little is known about the best way to structure health systems to facilitate CKD prevention and control, or how to integrate these objectives into emerging national and international strategies for NCDs. This inventory includes a synopsis of the various models of CKD care in the participating countries (mainly in Western Europe, Canada and Israel), including the perceptions of key stakeholders about the current quality of CKD care.

Key objectives

Primary objectives:

Facilitate understanding of the structure, organization and delivery of CKD care at a multinational level.
Facilitate between-country and within-country comparisons and analyses, identifying key strengths of certain systems, and explore opportunities for international collaborations for optimal CKD care.

Secondary objectives:

Engage major stakeholders (World Health Organization, United Nations, European Union, World Bank) to increase the profile of CKD among the NCDs as a leading public health issue.
Define the information structures that a global CKD care surveillance network would need in order to optimize health and outcomes for patients anywhere in the world who have or are at risk of developing CKD.

The inventory

First, the inventory provides an overview of existing CKD care policy and context in the healthcare system, with a description and evaluation of relevant policies, financing, structures, guidelines and care initiatives across the countries studied. Second, it provides an overview of how CKD care is organized in individual countries and a description of CKD burden between selected countries, focusing on elements that are most relevant to service delivery and policy Third, it provides a synthesis and comparative analysis of the information from the individual countries. Fourth, it makes recommendations to policymakers, practitioners, and researchers about the optimal organization and delivery of CKD care.

Data were obtained from multiple sources, including renal registries, government reports and published literature for quantitative data, and a detailed survey of key stakeholders from each country for additional qualitative information.

Based on the recommendation of the KH4L Steering Committee, 19 countries were selected for inclusion, namely, Austria, Belgium, Canada, Denmark, Finland, France, Germany, Greece, Ireland, Israel, Italy, Netherlands, Norway, Portugal, Spain, Sweden, Switzerland, Turkey, and the United Kingdom. All of the countries except Canada and Israel are located in Europe, and they all share similar political and healthcare policy systems. Canada and Israel were chosen because the administrative structures of their health systems resemble those of the European nations.

All included countries have a universal healthcare system that strives for equitable access to health care, and/or that facilitates access based on need rather than ability to pay. Despite this, access to care is at least partly contingent upon financial factors, such as the degree of copayment for medications or services. In all included countries, basic health care services are free at the point of delivery, and mechanisms exist to reduce the financial burden associated with copayments. Access to facilities, services, or medications was not identified as a major barrier to optimal CKD care for any country overall. However, this overall judgment does not consider individual-level factors that likely do influence access to care (such as race, social status, educational attainment, mobility status), or regional differences in specialist availability, travel time, etc, that may influence access to care within particular countries.

There were significant variations in CKD care organization and delivery across countries. There was a general absence of CKD coordinated care pathways, policies and frameworks. Only three of the 19 countries (Ireland, Norway, UK) have a national service framework for CKD. In only 11 of the countries are CKD care guidelines available, with a variable degree of implementation. None of the countries with guidelines have established schemes to monitor adherence except the UK Quality Outcomes Framework (QoF), which rewards performance for achieving certain thresholds in quality of care parameters. Few countries used QI strategies (continuous monitoring of structures, process of care and outcomes to ensure optimal healthcare delivery). For most countries, ESRD care is the sole focus of kidney-related QI activities, which are often administered in conjunction with a national registry.

Overall, CKD is not perceived to be a health care priority for decision makers (political leaders) and is not included in the national NCD agenda in most countries. In only three countries (Ireland, Norway, UK) did the majority of respondents (>75%) believe that CKD was recognized as a health priority by the national (federal) government. There is limited awareness about the clinical significance of CKD among providers and the general population. In most countries, regional/provincial authorities and individual hospitals were responsible for the oversight of CKD care.

The distribution of the nephrology workforce across countries was variable, with Italy having the highest number of nephrologists (94 per 1000 ESRD patients), and Turkey the lowest (7 per 1000 ESRD patients). All countries except Portugal, Canada, UK, Turkey and Ireland had at least one nephrologist per 50 ESRD patients. Multidisciplinary teams (groups of healthcare professionals representing the different disciplines needed for comprehensive CKD care) were lacking as only eight countries had organized multidisciplinary teams for CKD care. The exact mix of disciplines needed also varied across settings within individual countries.

The medicines, equipment and technologies needed to diagnose and manage CKD are generally available in all countries, including treatment with long-term dialysis and kidney transplantation. Data on kidney failure treated with renal replacement (dialysis and transplantation) were consistently available for the 16 countries that have a renal registry. Only Sweden had a registry for less severe forms of CKD. Data on the burden and costs of early CKD care are very limited, as only the UK had nationally representative data on processes of CKD care and outcomes through the government-led QoF.

The key barriers limiting effective CKD care delivery were broadly identified as political (lack of government commitment), economic (absent/limited funding with competing priorities), organizational (lack of structures and poor coordination) and low awareness about CKD and its consequences among the general population, primary care providers and political leaders.

In summary, the inventory identified some consistent findings across countries: substantial limitations of available CKD data (disease burden, process of care and outcomes), a general absence of national strategies for CKD care, workforce limitations (especially for allied health professionals), low awareness of CKD, and generic barriers to quality healthcare. These barriers include political (lack of government commitment), economic (limitations in resource availability) and organizational (issues with care organization and delivery) factors.

To overcome these barriers and limitations, many of the countries included in the inventory have implemented strategies towards improving the overall quality of CKD care, but many have not. Since not all countries will be able to support a coordinated national approach to CKD management (eg, those where regional authorities have primary responsibility for care delivery), other strategies will be needed in these settings. There is therefore a need for more commitment and effective leadership by the global nephrology community, the relevant key global bodies including the ISN and its sister societies, and other partners in global chronic disease advocacy (International Diabetes Federation [IDF], World Heart Federation [WHF], World Hypertension League, UN, EU, OECD, WHO and the World Bank) to build a strong advocacy platform in order to garner a political will on the part of national governments for more tightly organised CKD care structures and delivery systems. Progress will require concerted efforts in each country at the national level and would be facilitated by leadership by credible, respected and impartial international and national organizations (ISN, ERA/EDTA, and national nephrology associations) that can use lessons learned in one country for the benefit of others.

Structure

The inventory is structured with the first section (introduction) providing a synopsis of the background, context and objectives for the inventory. A brief description of the methods used for this initiative is presented in this section. The second section outlines the specific country reports in 19 separate chapters. Each chapter contains a country-specific profile, governance structure, organization of healthcare systems and the specifics of CKD (structure, access, workforce and capacity, disease burden and stakeholder perceptions of CKD care delivery). The third section summarizes the key findings for specific countries. The fourth section presents a synthesis, comparison and analysis of individual country data, to facilitate understanding of performance variations over time and across the included countries. The final section summarizes the findings, highlighting gaps, challenges and opportunities for improvement, and makes recommendations for the future.

CLICK HERE to download the KH4L Chronic Kidney Disease Multinational Inventory

Policy Brief

POLICY BRIEF

This policy brief summarizes the Chronic Kidney Disease Multinational Inventory, a report produced by the Alberta Kidney Disease Network (AKDN) for the Kidney Health for Life (KH4L) initiative with support from the International Society of Nephrology (ISN).

Context

KH4L Stats Chronic kidney disease (CKD) is a global public health problem because of its serious health consequences and high healthcare costs. CKD is common, associated with low quality of life, treatable, and linked to other major non-communicable chronic diseases (NCDs) such as diabetes, hypertension and cardiovascular diseases (CVD). Because of increasing attention to the costs and consequences of CKD, considerable effort has been made by individual countries to improve the care of people with or at risk for CKD. Anecdotal

experience suggests that the approaches taken and progress attained have varied substantially between and within countries. Since no concerted attempt has previously been made to summarize work and progress to date,

little is known about the best way to structure health systems to facilitate CKD prevention and control, or how to integrate these objectives into emerging national and international strategies to manage NCDs.

The purpose of this inventory is to summarize the structure and format of selected national efforts to deliver high-quality CKD care; to assess whether these characteristics are associated with health system performance; and to facilitate understanding of performance variations over time and between countries. The inventory has 5 key objectives:

Provide an overview of existing CKD care policy and context in the healthcare system, including a description and evaluation of relevant policies, financing, structures, guidelines and care initiatives.
Provide an overview of how CKD care is structured and delivered (and the various roles of the key stakeholders) within the included countries. Where possible, important within-country regional variation is described.
Describe and compare relevant epidemiological aspects of CKD (burden of disease, costs and consequences) between selected countries, focusing on elements that are most relevant to service delivery and development of health policy.
Summarize the epidemiological status of end stage renal disease (ESRD) and its treatment by renal replacement therapy (RRT), focusing on elements that are most relevant to prevention and control of CKD.
Synthesize individual country data and identify specific best practices/quality measures that could be considered for uptake internationally.

Methodology

KH4L is an international multi-stakeholder initiative whose goal is to work collaboratively with existing organizations and initiatives at international and national levels to promote early detection and effective treatment of CKD. Through understanding relevant health policies, practices and infrastructure, KH4L aims to facilitate high standards of care for CKD patients.

In the development of this report, we synthesized the various approaches to CKD management and control across 19 wealthy countries (Austria, Belgium, Canada, Denmark, Finland, France, Germany, Greece, Ireland, Israel, Italy, Netherlands, Norway, Portugal, Spain, Sweden, Switzerland, Turkey and the United Kingdom). The report was developed through an extensive literature research and surveys.

Data for the inventory were collected by searching published and unpublished documents from international organizations/bodies (OECD, WHO, UN, Commonwealth Fund). In addition, we considered other data sources such as reports published by national governments (and occasionally regional governments within countries) on the organization and delivery of CKD care. Additional reports were identified based on guidance from key stakeholders (opinion leaders and national nephrology society/ISN leaders). This was supplemented with a review of data from renal registries (ERA-EDTA Registry, UK Renal Registry, Canadian Organ Replacement Register [CORR]), and for the European countries that do not provide data to the ERA-EDTA Registry (Germany, Ireland and Switzerland), local national registry data was used where possible. We also consulted national nephrology societies, who directly provided data as well as suggestions for alternative data sources pertaining to their own country.

We identified country-specific project leaders through the International Society of Nephrology (ISN), KH4L National Steering Groups, ISN leadership, and CKD opinion leaders in the identified countries. The project leaders served as a resource for data sources, contacts for interviews, and reviewers for their individual country-specific chapters of the inventory.

The survey was delivered to the various stakeholders electronically or on paper according to their preferences. The stakeholders (patients, care providers and policymakers) were identified by the country project leaders and were supplemented by an email list provided by the ISN. Three categories of respondents were involved:

Care providers such as specialist physicians (nephrologists, cardiologists and endocrinologists) and family physicians or general practitioners.
Policymakers including those involved directly with the organization of CKD care (renal policymakers) and those with a general remit (non-renal health policymakers).
CKD patients and their relatives, and leaders or representatives.

This survey was followed up by interviews of the national experts and opinion leaders on CKD care policy by telephone and videoconferences to clarify discrepancies or gaps in the data obtained from the survey.

Findings

The countries studied share common attributes of health systems organization but exhibit significant variation in the specifics of how CKD care is delivered. All the countries have well-organized, publicly funded healthcare systems that provide at least basic coverage for medical services, and all are signatories to a WHO action plan for the prevention and control of NCDs over the next decade. No major financial barriers to accessing CKD care as it is currently delivered were identified for any of the countries. Most countries require co-payments to access care (consultations and medications), although these payments are reduced or eliminated on the basis of medical or financial need. Chronic kidney disease is not recognized as a health care priority for decision makers (political leaders) and is not included in the national NCD agenda in most countries. Perhaps as a result, only three countries (Ireland, Norway, UK) have a national service framework for CKD. In 17 countries, regional/provincial authorities and individual hospitals share responsibility for the oversight of CKD care. Coordinated care pathways for CKD are generally absent, and CKD care guidelines are available in only 11 of the countries, with a variable degree of implementation. Some countries identified an inadequate supply of nephrologists as a potential barrier to effective CKD care, but the supply of primary care physicians and nurses is generally not considered a major barrier to the delivery of optimal CKD care.

Data on kidney failure treated with dialysis or transplantation are available in all countries. Sixteen of the countries had a registry to monitor trends in the treatment of kidney failure, and only Sweden had a registry for less severe forms of CKD. Nationally representative data on the burden of early CKD and costs of care are very limited. National data on processes of CKD care and outcomes are available only for the UK through its government-led quality and outcomes framework. Stakeholders identified the key barriers to effective CKD care delivery as political (lack of government commitment), economic (absent/limited funding with competing priorities), organizational (lack of structures and poor coordination) and low awareness about CKD and its consequences among the general population, primary care providers and political leaders.

Policy implications

Different nations with varying health system structures and organization

Issue: The difficulties in comparing health policy across countries are widely acknowledged; these stem from the inherent cultural, political, geographical and economic differences between countries, as well as differences in disease burden and reporting practices across nations.

Recommendation: Variation in structures and organization makes it difficult to identify and apply a universal approach for development of an effective and sustainable CKD care policy for the various countries. The ISN in collaboration with other stakeholder organizations (WHO, UN, World Bank, European Union and related organizations) should develop a global framework for an effective and sustainable CKD care delivery model.

Countries sharing common barriers and challenges

Issue:A number of barriers to the optimal care of people with non-dialysis dependent CKD are common across the 19 countries studied: limited workforce capacity; the nearly complete absence of mechanisms for disease surveillance or the coordinated management of people with CKD; poor integration of CKD care with other NCD control initiatives; and low awareness of the significance of CKD.

Recommendation: These common challenges reflect the need for international cooperation to strengthen health systems and policies for CKD care: some countries are further ahead than others, but all have considerable work to do.

Global health, building partnerships and supporting the poor nations

Issue: Although all the countries studied were relatively wealthy, the findings have implications for CKD care in other settings. Many of the opportunities and obstacles identified may be equally applicable to less developed nations in Sub-Saharan Africa and South Asia where renal replacement therapy (dialysis and transplant) is completely unavailable or unaffordable.

Recommendation: Relevant international stakeholders (ISN, WHO, UN, World Bank) should consider how these findings and recommendations could be applied to health systems in these low- or middle-income countries.

Research and development

Issue: The findings also have important implications for the CKD research agenda. In the last few decades, kidney research has concentrated mainly on basic aspects of disease (pathogenesis and pathophysiology), epidemiology (defining disease measures, burden, population trends and outcomes) and therapeutics (clinical trials to prove effective interventions). This emphasis has yielded high-quality information on pathophysiology and development of evidence-based guidelines for CKD care.

Recommendation: Given the observed variability in how care is organized and delivered across countries in the report, what is most needed now is high-quality research on optimal care structures, care pathways, behavior change (for providers and patients) and a better understanding of how to ensure uptake of best practices across nations.

CLICK HERE to download the KH4L Chronic Kidney Disease Multinational Inventory

KH4L Chronic Kidney Disease Multinational Inventory

Executive Summary

Policy Brief

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