Understanding distribution and variability in care organization and services for the management of kidney care across world regions
2021; Elsevier BV; Volume: 11; Issue: 2 Linguagem: Inglês
10.1016/j.kisu.2021.01.010
ISSN2157-1724
AutoresAminu K. Bello, Ikechi G. Okpechi, Vivekanand Jha, David C.H. Harris, Adeera Levin, David W. Johnson,
Tópico(s)Renal and Vascular Pathologies
ResumoChronic kidney disease (CKD) is a major global public health problem. In 2017, CKD affected nearly 700 million people and caused approximately 1.2 million deaths worldwide.1Bikbov B. Purcell C. Levey A. et al.Global, regional, and national burden of chronic kidney disease, 1990-2017: a systematic analysis for the Global Burden of Disease Study 2017.Lancet. 2020; 395: 709-733Abstract Full Text Full Text PDF PubMed Scopus (546) Google Scholar Progression of CKD to kidney failure is associated with significant morbidity, loss of life years, reduced quality of life, increased cost of treatment, and death. The International Society of Nephrology (ISN), the world's umbrella nephrology body, continues to engage in advocacy for implementation of innovative strategies to improve care for patients with kidney disease worldwide. Significant variations exist in the availability and accessibility of kidney care services, yet reliably quantifying these gaps, especially between countries at different levels of development, has been an ongoing challenge. The ISN has recognized the need to identify these gaps as an initial step toward fulfilling its mandate of improving kidney care around the world. The ISN Global Kidney Health Atlas (GKHA) initiative was established with the following key objectives: (i) to provide a high-level overview of the burden of kidney disease as well as the current state of care; (ii) to conduct a comparative analysis of the capacity to deliver care across countries and regions; and (iii) to provide an advocacy tool to engage major stakeholders (e.g., the World Health Organization [WHO], World Bank, United Nations, Organization for Economic Co-operation and Development, European Union, and national governments) in supporting the expansion of available services for care. The first iteration of the ISN-GKHA was published in 2017, followed by the second iteration in 2019. The atlas has become an authoritative source of information regarding the availability and accessibility of kidney care worldwide. The first iteration of the ISN-GKHA focused on specific kidney care issues from a global perspective, such as the size of the nephrology workforce, access to health technologies and medications, capacity for nephrology clinical research, the pervasiveness of health information systems, health systems oversight, and funding structures. The second iteration covers similar topics, but also focuses on regional availability, affordability, accessibility, and quality of care for patients with kidney disease. Data on the global burden of kidney disease and resources for care delivery were collected through a combination of rigorous desk research and a survey of subject matter experts in each country. The WHO universal health coverage (UHC) framework guided the desk research to ensure the selection and analysis of high-quality data sources. For the survey, relevant kidney care information was obtained from at least 3 key stakeholders in each country. In this issue of Kidney International Supplements, we present data for each of the 10 ISN regions collected for the second iteration of the ISN-GKHA. The ISN regions do not align with traditional continental boundaries or country groupings used by major international organizations (e.g., WHO or World Bank). Instead, the ISN regions refer to groups of countries based on geographic proximity that enable the ISN to effectively engage in advocacy and implement training and educational programs in those areas. For instance, although Mexico is part of North America, it is part of the ISN's Latin America region (https://www.theisn.org/about-isn/regions). Also, some terms have been replaced in the regional articles to ensure conformity with recent nomenclature recommendations by Kidney Disease: Improving Global Outcomes.2Levey A.S. Eckardt K.U. Dorman N.M. et al.Nomenclature for kidney function and disease: executive summary and glossary from a Kidney Disease: Improving Global Outcomes (KDIGO) Consensus Conference.Kidney Int Rep. 2020; 5: 965-972Abstract Full Text Full Text PDF PubMed Scopus (6) Google Scholar Hence, although the atlas was published in 2019 using the term "end-stage kidney disease" to refer to patients who need or are currently receiving treatment for advanced kidney disease, we have replaced this term with "kidney failure," and where possible, replaced the term "renal" with "kidney." A total of 160 countries (of 182 contacted) responded to the survey, accounting for 98% of the world's population. A major focus in the current iteration relates to the availability of various forms of kidney replacement therapy (KRT; dialysis and transplantation) across ISN regions (Figure 1). Although hemodialysis was available in all countries worldwide, there was significant variability in the availability of peritoneal dialysis (PD) and kidney transplantation (KT). The availability of PD and KT was highest in North and East Asia, where all KRT modalities are available in 100% of jurisdictions that responded to the survey (i.e., mainland China, Hong Kong, Macao, Taiwan, South Korea, Japan, and Mongolia). PD and KT availability were lowest in Africa, where PD was available in 41% of responding countries and KT was available in 34% of responding countries (Figure 1). Despite all KRT modalities being present in all regions, access was lower in lower-income regions (Figure 2); this was likely related to funding models and the high out-of-pocket payments for KRT services. On average, >50% of patients who required dialysis were able to access it in 70% of countries worldwide. However, when analyzed by region, the proportions changed dramatically (e.g., 100% of countries in Western Europe and 94% of countries in Latin America, vs. only 14% of countries in South Asia) (Figure 2). Such differences quantify the gaps in the availability and accessibility of kidney care services across regions.Figure 2Accessibility to kidney replacement therapy in all International Society of Nephrology regions. NIS, Newly Independent States.View Large Image Figure ViewerDownload Hi-res image Download (PPT) New data on kidney care are included in the second iteration of the ISN-GKHA that were unavailable in the previous edition, including information about funding structures for various KRT services (e.g., PD catheter insertion, arteriovenous fistula creation, and kidney transplant surgery), the quality of reporting with regard to various KRT indexes, the availability of conservative care services, and the availability of treatment options for complications of kidney failure. These data have been provided in all regional reports and reveal stark interregional and intraregional differences. The reports, especially those revealing low accessibility to KRT in regions such as Africa and South Asia, where many countries are considered to be underresourced, can be used to strengthen advocacy to make kidney disease a global health priority.3Harris D.C.H. Davies S.J. Finkelstein F.O. et al.Increasing access to integrated ESKD care as part of universal health coverage.Kidney Int. 2019; 95: S1-S33Abstract Full Text Full Text PDF PubMed Scopus (58) Google Scholar The methods utilized for this study are applicable to all the regional articles published in this Supplement and were similar to those used for the first iteration of the ISN-GKHA. These have been described in detail elsewhere.4Bello A.K. Johnson D.W. Feehally J. et al.Global Kidney Health Atlas (GKHA): design and methods.Kidney Int Suppl. 2017; 7: 145-153Abstract Full Text Full Text PDF Scopus (25) Google Scholar Herein, we provide a description of the desk research and survey administration processes of the study. Desk research efforts focused predominantly on reviewing published scientific literature, government reports, and other relevant data sources on the various aspects of epidemiology of kidney failure and health system characteristics. The WHO UHC domains (service delivery, health workforce, information systems, medicines and medical products, financing, and leadership) were used as a framework to structure these efforts.5World Health OrganizationMonitoring the building blocks of health systems: a handbook of indicators and their measurement strategies.https://www.who.int/healthinfo/systems/monitoring/en/Google Scholar Specific research elements include the following: (i) a scoping literature review of national health system characteristics associated with each of the UHC domains, with a focus on important elements relevant to CKD care organization and delivery; and (ii) a systematic review of relevant CKD epidemiology data (burden and outcomes) across countries and regions.1Bikbov B. Purcell C. Levey A. et al.Global, regional, and national burden of chronic kidney disease, 1990-2017: a systematic analysis for the Global Burden of Disease Study 2017.Lancet. 2020; 395: 709-733Abstract Full Text Full Text PDF PubMed Scopus (546) Google Scholar,6Abu-Aisha H. Elamin S. Peritoneal dialysis in Africa.Perit Dial Int. 2010; 30: 23-28Crossref PubMed Scopus (41) Google Scholar, 7ERA-EDTA RegistryERA-EDTA Registry Annual Report 2017.https://www.era-edta.org/en/registry/Date accessed: July 16, 2020Google Scholar, 8Jain A.K. Blake P. Cordy P. Garg A.X. Global trends in rates of peritoneal dialysis.J Am Soc Nephrol. 2012; 23: 533-544Crossref PubMed Scopus (336) Google Scholar, 9Liyanage T. Ninomiya T. Jha V. et al.Worldwide access to treatment for end-stage kidney disease: a systematic review.Lancet. 2015; 385: 1975-1982Abstract Full Text Full Text PDF PubMed Scopus (794) Google Scholar, 10United States Renal Data System2018 USRDS Annual Data Report: Epidemiology of Kidney Disease in the United States. National Institutes of Health, National Institute of Diabetes and Digestive and Kidney Diseases, Bethesda, MD2018Google Scholar, 11González-Bedat M.C. Rosa-Diez G.J. Fernández-Cean J.M. et al.National kidney dialysis and transplant registries in Latin America: how to implement and improve them.Rev Panam Salud Publica. 2015; 38: 254-260PubMed Google Scholar, 12World Health OrganizationThe global health observatory.https://www.who.int/gho/en/Google Scholar Desk research efforts enabled the collection of relevant sociodemographic and economic data, as well as data about the current burden of CKD and the status of kidney care across regions. To gather information on current kidney care practices and the burden of kidney failure, 2 literature reviews were performed:1.A broad literature review of national health system characteristics associated with each of the WHO UHC domains with an emphasis on important elements relevant to the organization and delivery of kidney failure care. The data sources included the following:•Data and reports published by the WHO Global Observatory, United Nations, World Bank, and Organization for Economic Co-operation and Development;•Both published and unpublished documents from international organizations/bodies (i.e., Organization for Economic Co-operation and Development, WHO, United Nations, Commonwealth Fund, World Bank, and European Union and its affiliates) and reports published by national governments (and occasionally regional governments within countries) on the organization and delivery of kidney failure care; and•Additional literature identified by key stakeholders (i.e., opinion leaders, national nephrology society leaders, and ISN leaders) and through consultation with national nephrology societies and ISN regional boards.2.A review of relevant kidney failure epidemiology data on disease burden and outcomes across countries and regions. The objective of the review was to collect epidemiological data on the incidence and prevalence of KRT. Data on KRT costs and health system features across countries and regions with implications for kidney failure care were also reviewed. Data on key estimates of KRT were defined by the incidence and prevalence of kidney failure (overall) and by different dialysis modalities (hemodialysis and PD) and KT. These data were extracted from key reports, including annual reports of the kidney failure registries7ERA-EDTA RegistryERA-EDTA Registry Annual Report 2017.https://www.era-edta.org/en/registry/Date accessed: July 16, 2020Google Scholar (Canadian Organ Replacement Register, https://www.cihi.ca/en/canadian-organ-replacement-register-corr; Malaysian National Renal Registry, https://www.msn.org.my/nrr/mdtr_report.jsp; the Singapore Renal Registry, https://www.nrdo.gov.sg/publications/kidney-failure; the Thailand Renal Replacement Therapy Registry, https://www.nephrothai.org/annual-report-thailand-renal-replacement-therapy-2007-2019-th/; the Australia and New Zealand Dialysis and Transplant Registry, https://www.anzdata.org.au/anzdata/publications/reports/; and the French Renal Epidemiology and Information Network registry report chapter on overseas territories) and databases, such as the Global Observatory on Donation and Transplantation,13GODTGlobal Observatory on Donation and Transplantation database.http://www.transplant-observatory.org/data-charts-and-tables/Date accessed: July 16, 2020Google Scholar as well as identified relevant published and gray literature. We defined CKD, using the definition of Kidney Disease: Improving Global Outcomes, as abnormalities of kidney structure or function (specifically, estimated glomerular filtration rate < 60 ml/min per 1.73 m2), present for >3 months.14Chapter 1: definition and classification of CKD.Kidney Int Suppl (2011). 2013; 3: 19-62Abstract Full Text Full Text PDF PubMed Scopus (446) Google Scholar Details of other definitions, including elements of KRT, conservative kidney management, key standards of availability, accessibility, quality, affordability, and patient-reported outcome measures that we have used throughout the regional articles have been published.15Bello A.K. Levin A. Lunney M. et al.Status of care for end stage kidney disease in countries and regions worldwide: international cross sectional survey.BMJ. 2019; 367: l5873Crossref PubMed Scopus (51) Google Scholar All data on annual costs of KRT were obtained from published reports and were converted into equivalent US dollars with all the data inflated for the year 2016 as necessary using the World Bank purchasing power parity conversion table based on gross domestic product (https://data.worldbank.org/indicator/PA.NUS.PPPC.RF). We used 2016 as the benchmark as the most recent data available at the time of data collection on cost of KRT were from 2016. The ISN-GKHA project was a multinational, cross-sectional survey conducted by the ISN to assess current capacity for KRT around the world. Through our international contacts, collaborators, ISN leaders, and regional boards, we identified project leaders at the regional and national levels, including national nephrology association leaders and opinion leaders. The framework that was applied to the design of the questionnaire to derive information about national capacities and responses to noncommunicable disease prevention and control considered a number of documents, including WHO UHC: Supporting Country Needs, the ISN Acute Kidney Injury "0by25" initiative, WHO Noncommunicable Disease Surveys (2000, 2005, 2010, and 2013), the World Heart Federation "25 by 25" initiative, the International Diabetes Federation Global Diabetes Atlas, the WHO Global Atlas on Cardiovascular Disease Prevention and Control, Lancet commissions in other chronic disease domains, as well as multiple United Nations policy documents on strategies and policy for noncommunicable diseases.16Guariguata L. Whiting D. Weil C. et al.The International Diabetes Federation diabetes atlas methodology for estimating global and national prevalence of diabetes in adults.Diabetes Res Clin Pract. 2011; 94: 322-332Abstract Full Text Full Text PDF PubMed Scopus (160) Google Scholar, 17Huffman M.D. Perel P. Beller G.A. et al.World Heart Federation emerging leaders program: an innovative capacity building program to facilitate the 25 × 25 goal.Glob Heart. 2015; 10: 229-233Crossref PubMed Scopus (5) Google Scholar, 18Mehta R.L. Cerdá J. Burdmann E.A. et al.International Society of Nephrology's 0by25 initiative for acute kidney injury (zero preventable deaths by 2025): a human rights case for nephrology.Lancet. 2015; 385: 2616-2643Abstract Full Text Full Text PDF PubMed Scopus (482) Google Scholar, 19Moran A.E. Roth G.A. Narula J. et al.1990-2010 Global cardiovascular disease atlas.Glob Heart. 2014; 9: 3-16Crossref PubMed Scopus (94) Google Scholar The initial survey questions were further developed through a series of reviews with relevant experts, the ISN Executive Committee, and regional leadership. The questionnaire was peer reviewed for content validity and comprehensiveness before it was piloted with the 10 ISN regional boards to identify any logistical and feasibility issues (e.g., translation needs). The format and content of the questionnaire were finalized on the basis of feedback and identified issues, including translating the original English-language survey instrument into French and Spanish. The questionnaire was designed in 5 modules that assessed the national and regional profiles for readiness, capacity, and response to kidney failure, corresponding to each of the 6 UHC domains.5World Health OrganizationMonitoring the building blocks of health systems: a handbook of indicators and their measurement strategies.https://www.who.int/healthinfo/systems/monitoring/en/Google Scholar Specifically, the modules focused on the following:•Health finance and service delivery (UHC domains 1 and 2), with questions evaluating funding mechanisms (CKD and KRT), intranational variations in kidney failure care delivery, and oversight;•Health workforce for nephrology care (UHC domain 3), with questions evaluating clinical responsibility and availability of health care providers essential for kidney failure care delivery;•Essential medications and health product access for kidney failure care (UHC domain 4), with questions evaluating the capacity for KRT service provision, preparation for KRT, and nutritional services; access to dialysis and transplant options and the quality of those options; access to conservative care; KRT accessibility and affordability; and cost reimbursement plans;•Health information systems and statistics (UHC domain 5), with questions evaluating the availability of registries and/or other surveillance systems for acute kidney injury or CKD; and•Leadership and governance (UHC domain 6), with questions evaluating national health policies and strategies, advocacy (acute kidney injury, CKD, and kidney failure), and barriers to optimal kidney failure care delivery. The questionnaire was accompanied by a detailed information sheet about the ISN-GKHA, detailed instructions for completion, and a glossary defining key terms used in the survey. An online survey was used to collect data about the current burden of kidney disease and kidney care capacity. Country and regional leaders of the ISN identified at least 3 key stakeholders per country, including the following: (i) national nephrology society leaders; (ii) policy makers, including those involved directly with the organization of CKD care; and (iii) patients with kidney disease. Invitations to participate were sent via e-mail and included a link to the survey's online portal (www.redcapcloud.com). The European Kidney Patients' Federation, Kidney Foundation of Canada, US National Kidney Foundation, and Kidney Health Australia were involved in the development of the survey. The study was conducted in accordance with the Checklist for Reporting Results of Internet E-Surveys,20Eysenbach G. Improving the quality of Web surveys: the Checklist for Reporting Results of Internet E-Surveys (CHERRIES).J Med Internet Res. 2004; 6: e34Crossref PubMed Scopus (1336) Google Scholar and was approved by the University of Alberta Research Ethics Committee (protocol number PRO00063121). All survey participants provided informed consent. The survey was available in English, Spanish, and French, and was conducted from July to September 2018. Intensive follow-up was performed with ISN regional and national leaders to ensure complete and timely responses during the study period, and inconsistencies in responses were addressed and resolved during follow-up inquiries with ISN regional leaders and stakeholders involved with the survey. Details about the survey questionnaire have been published elsewhere.15Bello A.K. Levin A. Lunney M. et al.Status of care for end stage kidney disease in countries and regions worldwide: international cross sectional survey.BMJ. 2019; 367: l5873Crossref PubMed Scopus (51) Google Scholar Questions were structured to cover various aspects of kidney care across all participating regions, including disease burden, capacity to provide KRT and conservative care, health system financing for KRT, funding for medications, workforce availability, services and registries used in kidney failure care, and leadership and governance in kidney failure care provision. The survey questionnaire is provided in the Supplementary Appendix. To facilitate data collation, responses to the French and Spanish surveys were first converted to English by certified translators. Then, data from all individual questionnaires were automatically extracted and cleaned using Microsoft Excel and merged into a single file to create the global database. This was housed in a secured centralized computer system with automated backups. ISN regional leaders were consulted to ensure that collated data were consistent with their understandings and were of high quality. Each regional board reviewed its output to clarify any ambiguity or inconsistencies. Any major inconsistencies that remained after the reviews were systematically addressed during follow-up inquiries with the stakeholders involved with the survey. Further validation was performed at the national and regional levels by triangulating the findings with published literature and gray sources of information (i.e., government reports and other sources provided by the survey respondents). The framework developed by the WHO, Assessing National Capacity for the Prevention and Control of Noncommunicable Diseases, was leveraged during statistical analysis of the collated data.21World Health OrganizationAssessing national capacity for the prevention and control of NCDs.https://www.who.int/ncds/surveillance/ncd-capacity/en/Date accessed: July 16, 2020Google Scholar The analysis was conducted using STATA 15 software (StataCorp LLC, College Station, TX, 2017). Using country as the unit of analysis, responses were summarized on the basis of the key questionnaire domains using a descriptive statistical approach and reported as counts and percentages. Results were stratified by ISN region and by World Bank income group (see Results sections of each of the 10 regional articles). The data reported in the ISN-GKHA do have some limitations. Country-level information on the incidence and prevalence of CKD and costs of care were limited by findings in the literature. In addition, because of the subjective nature of the survey process, survey data may have been affected by recall bias or opinions, and may not have necessarily reflected granular, patient-level information. Moreover, some of the metrics used to measure accessibility may have been imperfect; for example, the number of dialysis units per million population may not have reflected the size or location of dialysis centers. Also, it is widely known that surveys are subject to social desirability bias, as respondents might not like to portray their countries or regions in a negative way. The accuracy of the survey data is therefore dependant on how correctly respondents represented the status of services in their country. Another potential limitation of this survey relates to the higher proportion of nephrologists who participated in the survey in all regions compared to administrators, policy makers, and other stakeholders (e.g., nurses). One reason for this could be because nephrologists are primarily responsible for care of patients with kidney failure and therefore more likely to be aware of the details surveyed in this study. Future surveys that include more nonnephrologist respondents across regions will likely improve and strengthen the impact of the survey. Future surveys will also need to allow participation of more respondents from countries with large populations (e.g., China, India, Indonesia, Brazil, and Nigeria) as this is more likely to provide better representation of the status of kidney failure care in those countries. Finally, this survey was also limited by not asking granular questions related to KRT modalities, such as availability of automated PD, comparison of in-center versus home hemodialysis, use of preemptive KT, or details on KT donor types. However, these were not the focus of the survey, which was to provide a global and regional snapshot on the status of KRT and kidney failure care across countries and regions. Despite these limitations, this study has several methodological strengths that helped in overcoming the observed limitations: (i) use of a validated framework based on the WHO's key building blocks of a functional health system, which informed the desk research and survey design; (ii) survey coverage of 98% of the world's population, thereby ensuring representative data for kidney care across world regions; (iii) participation in the survey process by regional and national stakeholders and nephrology opinion leaders with in-depth knowledge of local contexts; and (iv) an excellent response rate, with a majority of countries participating in the surveys (global response rate of 68.9%). Also, our study presented a comprehensive report on the capacity, structures, and services (including workforce) for the care of patients with kidney failure across world regions (10 articles representing the ISN regions). This represents the most comprehensive data available to date on the capacity of countries and regions to provide care for their teeming patients with kidney failure. The ISN regions and their leadership will use the information to identify gaps to enhance quality of care, and as an advocacy tool to their governments and other stakeholder organizations. VJ reports grants from GlaxoSmithKline and Baxter Healthcare, provides scientific leadership to George Clinical, and receives consultancy fees for Biocon, Zudis Cadilla, and NephroPlus, all paid to his institution, outside the submitted work. DWJ reports grants and personal fees from Baxter Healthcare and Fresenius Medical Care, travel sponsorship from Amgen, personal fees from Astra Zeneca, AWAK, and Ono, and grants from National Health and Medical Research Council of Australia, outside the submitted work. All the other authors declared no competing interests. This article is published as part of a supplement supported by the International Society of Nephrology (ISN; grant RES0033080 to the University of Alberta). We thank Kara Stephenson Gehman in International Society of Nephrology Global Kidney Health Atlas (GKHA) for carefully editing the English text of a draft of this article. We thank Jo-Ann Donner, coordinator at the ISN, for her prominent role and leadership in the manuscript management, editorial reviews, and submission process to Kidney International Supplements; Sandrine Damster, senior research project manager at the ISN, and Alberta Kidney Disease Network staff (Ghenette Houston, Sue Szigety, and Sophanny Tiv) for helping to organize and conduct the survey and for providing project management support. We also thank the ISN headquarters staff, including the Executive Director Charu Malik and the Advocacy team. We also appreciate the support from the ISN's Executive Committee, regional leadership, and Affiliated Society leaders at the regional and country levels for their help with the ISN-GKHA survey. Download .pdf (.4 MB) Help with pdf files Supplementary File (PDF)
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