African Renal Registry Research Articles

The state of kidney replacement therapy in Eastern Cape Province, South Africa: A call to action.

South Africa (SA) is one of the most financially unequal countries in the world. This situation is highlighted by disparate access to healthcare, particularly provision of kidney replacement therapy (KRT). Unlike the private sector, public sector access to KRT is highly rationed, and patient selection is based on suitability for transplantation and capacity. To investigate the state of the KRT service in Eastern Cape Province, SA, by analysing access to and provision of KRT in the province for individuals with end-stage kidney disease, as well as disparities between the private and public healthcare systems. This was a retrospective descriptive study to examine KRT provision and temporal trends in the Eastern Cape. Data were obtained from the South African Renal Registry and the National Transplant Waiting List. KRT provision was compared between the three main referral centres, in Gqeberha (formerly Port Elizabeth), East London and Mthatha, and between the private and public healthcare systems. There were 978 patients receiving KRT in the Eastern Cape, with an overall treatment rate of 146 per million population (pmp). The treatment rate for the private sector was 1 435 pmp, compared with 49 pmp in the public sector. Patients treated in the private sector were older at initiation of KRT (52 v. 34 years), and more likely to be male, to be HIV positive, and to receive haemodialysis as their KRT modality. Peritoneal dialysis was more commonly used in Gqeberha and East London as the first and subsequent KRT modality, compared with Mthatha. There were no patients from Mthatha on the transplant waiting list. There were no waitlisted HIV-positive patients in the public sector in East London, compared with 16% of the public sector patients in Gqeberha. The kidney transplant prevalence rate was 58 pmp in the private sector and 19 pmp in the public sector, with a combined prevalence of 22 pmp, constituting 14.9% of all patients on KRT. We estimated the shortfall of KRT provision in the public sector to be ~8 606 patients. Patients in the private sector were 29 times more likely to access KRT than their public sector counterparts, who were on average 18 years younger at initiation of KRT, probably reflecting selection bias in an overburdened public health system. Transplantation rates were low in both sectors, and lowest in Mthatha. A large public sector KRT provision gap exists in the Eastern Cape and needs to be addressed urgently.

South African Renal Registry Annual Report 2020

The ninth annual report of the South African Renal Registry summarises the December 2020 data on kidney replacement therapy (KRT) for patients with kidney failure in South Africa. The numbers of patients reported here are substantially lower than those recorded in the previous report. This is likely the result of several factors, including larger numbers of deaths from COVID-19 and other causes, delayed initiation of KRT due to the pandemic, and challenges with data submission to the registry during a period when personnel were overwhelmed with clinical responsibilities related to the pandemic. In December 2020, the number of patients who were being treated with chronic dialysis or transplantation stood at 8 734, a prevalence of 146 per million population (pmp). The prevalence of South Africans accessing treatment in the private healthcare sector was 729 pmp, whereas it was 44 pmp in the chronically under-resourced public sector, well below the rate reported for 1994.

South African Renal Registry Annual Report 2019

The eighth annual report of the South African Renal Registry summarises the 2019 data on kidney replacement therapy (KRT) for patients with kidney failure in South Africa. This round of data collection has been adversely affected by the COVID-19 pandemic, which has impacted on the completeness of the data. In December 2019, the number of patients who were being treated with chronic dialysis or transplantation stood at 9 937, a prevalence of 169 per million population (pmp). The prevalence in South Africans accessing the private healthcare sector was 788 pmp, whereas it was 57 pmp in the chronically under-resourced public sector, still below the rate reported for 1994.

The Ghana Renal Registry – a first annual report

There are few data on the treatment of kidney disease in sub-Saharan Africa and no formal reports of kidney replacement therapy (KRT) in Ghana. We report data from the newly established Ghana Renal Registry on the prevalence, causes, and modality of treatment of kidney disease in Ghana. Using the web-based data capture system of the African Renal Registry, data were obtained for patients who had KRT in Ghana between January and December 2017. A total of 201 patients started KRT, giving an incidence rate of 6.9 per million population (pmp). There were 687 patients on KRT, a prevalence rate of 23.6 pmp. The median age of prevalent patients was 45.5 years and 63.6% were male. Hypertensive kidney disease was the most common primary kidney disease, reported in 39.9%. The overwhelming majority of patients (96.2%) were treated with haemodialysis, 3.5% had a kidney transplant, and only two were on continuous ambulatory peritoneal dialysis. The incidence and prevalence of KRTtreated kidney failure in Ghana is low, and the patients are younger than those on KRT in high- and upper-middle income countries. The major cause of kidney failure is hypertensive kidney disease and the vast majority of the patients are treated with haemodialysis.

Global Dialysis Perspective: South Africa.

South Africa is an upper middle–income country with a population of 59.6 million people (1). Gauteng is the most densely populated province, and houses 26% of the population, followed by KwaZulu-Natal (19%), and the Western Cape (12%). About 29% of the population are <15 years old and 9% are ≥60 years. Approximately 13% of the population are seropositive for HIV. Life expectancy is estimated at 68.5 years for females and 62.5 years for males, whereas the infant mortality rate is 23.6 per 1000 live births. In 2019, the gross national income per capita was approximately $6040 (Atlas method, current US$), with 8% of the country’s gross domestic product spent on health care (2). Despite the transition to democracy in 1994, a high level of inequality remains, reflected in a Gini coefficient of 0.63 and an unemployment rate of 30% (2,3). This inequality is also reflected in a two-tiered health system. Access to a well-resourced private health care sector depends on the ability to pay for services, usually via medical insurance. Treatment for CKD is included in the set of “prescribed minimum benefits” that all registered medical insurance schemes in South Africa are obliged to provide for their members. The majority of South Africans (84%), however, are dependent on an under-resourced, government-funded, public health care sector. Public health care facilities use a sliding scale, where the fees charged are dependent on income. Indigent patients are able to access services free of charge (4). South Africa is faced with a high burden of infectious diseases (such as tuberculosis and HIV infection), noncommunicable diseases, maternal and childhood diseases, and injury-related diseases (5). These factors drive an epidemic of AKI and CKD. Two studies have estimated the population prevalence of CKD in South Africa. Adeniyi et al. (6) reported the …

Burden of end-stage renal disease in sub-Saharan Africa

Chronic kidney disease (CKD) particularly in its most severe form, end-stage renal disease (ESRD), is highly prevalent globally. Although both the incidence and prevalence appears to be increasing, the rate of increase is far higher in developing countries, probably as a result of underdevelopment, high incidence of communicable and noncommunicable diseases, poverty as well as inaccessible, unavailable, or unaffordable treatment modalities. The epidemiology differs remarkably between developing and developed economies - it afflicts the young and middle-aged in the former and older individuals in the latter. The etiologies also differ significantly, and the outcome is mainly determined by accessibility and availability of renal replacement therapies. While the three modalities of treatment namely hemodialysis, peritoneal dialysis, and kidney transplantation are available in sub-Saharan Africa, affordability of care remains a major challenge due to nonavailability of healthcare insurance in many of the countries, and where state support is available, dialysis and transplant rationing based on certain criteria remains a major limitation. Data on CKD and ESRD are largely unreliable because of a lack of renal registries in most countries, but the reactivation of the South African Renal Registry and its extension to cover other African countries may improve data quality. .

South African Renal Registry Annual Report 2018

The seventh annual report of the South African Renal Registry summarises the 2018 data on kidney replacement therapy (KRT) for patients with kidney failure in South Africa. In December 2018, the number of patients who were being treated with chronic dialysis or transplantation stood at 10 730, a prevalence of 186 per million population (pmp). Most patients are treated with haemodialysis in the private healthcare sector, where the prevalence was 839 pmp. In the public sector, which serves 85% of the South African population, the prevalence of KRT (67 pmp) remained below the level reported for 1994. Limpopo and Mpumalanga remain the most under-served provinces and Blacks the most under-served population group. The Western Cape province had the highest public sector treatment rates by a large margin and was also where most of the country’s public sector kidney transplants were performed.

A practical guide to the supportive and palliative care of patients with chronic kidney disease

We are sure that all of us involved in the field of renal medicine in South Africa would agree that the guidelines, published on page 86 of this issue, around the supportive care of renal patients, especially those who cannot access renal replacement therapy – produced in collaboration between the South African Renal Society and the Association of Palliative Care Practitioners of South Africa – will prove valuable in assisting us in making difficult decisions and in providing constructive advice on the management of our patients with advanced chronic kidney disease (CKD).South Africa’s GDP per capita, of around US$3600, places it within the upper-middle-income economic group. Unfortunately, our economy must cope with limited resources with the burden of both non-communicable and communicable diseases. We have one of the highest prevalences of HIV infection in the world, with high frequencies for the APOL1 G1 and G2 risk alleles for HIV-associated (and other) nephropathies [1]. The World Health Organization’s Global Health Observatory (https://www.who.int/data/gho) reports the crude prevalence of hypertension in South Africa at 24%, diabetes at 9.8%, overweight at 51.9% and physical inactivity at 37.2%.The South African Renal Registry [2] reports that 84% of South Africans rely on state-funded medical facilities. A metaanalysis by Kaze et al. [3] quotes the prevalence of CKD stages 3 to 5 to be around 4.8% of the population in sub-Saharan African countries, and in South Africa this amounts to some 2.7 million people with significant kidney disease. Considering our risk profile for renal disease, this is unlikely to be an overestimate. According to the renal registry, only around 11 000 individuals in South Africa are on dialysis or have functioning kidney transplants, with 3100 served by the public sector. Unfortunately, our transplantation rate is low – 4.8 pmp in the public sector and 15.2 pmp in the private sector between 1991 and 2015 [4]. Transplant centres in the UK reported adult deceased donor renal transplant rates between 24 and 66 per million population in 2018/19 [5].We have large numbers of individuals with end-stage renal disease (ESRD), who are on a palliative care path, not by choice, and this is distressing. These guidelines should not be a substitute for ongoing efforts by our government to “move as expeditiously as possible towards the full realisation of the right to healthcare services”, as enshrined in Section 27 of our constitution.We congratulate our nephrology and palliative care community, and thank our visiting Australian colleagues, for well thought out and practical guidelines, which cover all aspects of supportive care for ESRD patients, including effective and caring communication, symptom management, preserving renal function, end-of-life care, care of paediatric patients, and models for setting up a renal palliative care service. The South African Essential Drugs List was used where possible to ensure that the medications are universally available in South Africa. Graham Paget and Vakhtang RekhviashvilliSouth African Renal Society [see PDF file for references]

SAT-038 HEMODIALYSIS IN BURUNDI: DATA AND CHALLENGES

The incidence of end-stage renal disease (ESRD) is increasing worldwide at an annual growth rate of 8%. In Sub-Saharan Africa, economic and manpower factors dictate a conservative approach to therapy in most instances. The majority of those with ESRD perish because of the lack of funds, as very few can afford regular maintenance dialysis and renal transplantation is often not available. Hemodialysis remains the most common modality of management, with a very few units offering peritoneal dialysis. Chronic hemodialysis became available in Burundi in July 2014 commenced in a private unit. The country has now 6 dialysis units situated in one city, Bujumbura. Four units are in public hospitals and two in private clinics. This is a retrospective study.The data were extracted from the African Renal Registry on Burundi. All chronic hemodialysis patients from 2014 to 2017 were included. Their characteristics were analyzed with the aim of to determine the etiology, status and challenges of dialysis in Burundi. From 2014 to 2017, 65 patients have been treated by chronic hemodialysis in Burundi. There were 56 men (86.1%). The mean age was 52.16 years. Forty-eight patients (73.8%) were followed in a private unit and 28 (26.2%) in public units. The prevalence for 2017 of patients on renal replacement treatment (RRT) was 1.6 per million population. The etiology of end stage renal disease was diabetes mellitus (32.3%), hypertension (30.7%), glomerulonephritis (10.8%), cystic kidney disease (1.5%) and unknown (21.7%). The seropositive rate for hepatitis B virus was 4.6%, for hepatitis C virus 18.5% and for HIV 9.2%. The initial modality treatment was hemodialysis (98.5%) and peritoneal dialysis (1.5%). The frequency distribution of initial vascular access types was 40.6% for femoral, 59.4% for internal jugular catheter and 0% for arteriovenous fistula. The RRT vintage was 1.5 years, and majority 60% were undergoing dialysis twice, 27.7% thrice dialysis and 12.3 % only single dialysis session per week. The main complications were catheter infection (60%) and acute pulmonary edema (19%). The mortality rate was 77.7%, and 7 patients abandoned dialysis due to financial matter. The prevalence and outcomes associated with dialysis in Burundi are influenced by the following: absence of governement funding for dialysis, gross shortage of nephrologists, dialysis nurses, and technicians, lack of educational initiatives to promote dialysis, no establish health insurance to support dialysis definitely. To run dialysis in Burundi is a challenge. Our recommendations based on these observation include optimizing dialysis treatment initiatives and integrating them with other health strategies, as well as training of local health care providers, re-use of dialyzers to cut costs, implementation of a National Kidney Foundation to fund dialysis and a National Health Policy to prevent hypertension and diabetes.

SAT-023 SURVIVAL OF SOUTH AFRICAN PATIENTS ON RENAL REPLACEMENT THERAPY

In South Africa, 84% of the population rely on public sector healthcare and 16% use mainly private facilities. Since 2012, the South African Renal Registry (SARR) has reported on the treatment of end-stage renal disease (ESRD) in South Africa. Overall rates of renal replacement therapy (RRT) are low, with a prevalence of 183 per million population (pmp). Large disparities exist between the private and public sectors (798 versus 68 pmp), between provinces and between ethnic groups. Private sector patients on RRT are approximately 10 years older, have more diabetes and other comorbid illnesses, and are less likely to be transplanted or use peritoneal dialysis. The aim of this analysis was to explore, for the first time, survival of all incident and prevalent patients on RRT in South Africa. SARR data were used to estimate 1-year survival in patients on RRT by the Kaplan Meier method. The incident cohort included patients who started treatment between 1 January 2013 and 30 September 2016 and survived 90 days; the prevalent cohort included all those on RRT on 31 December 2015. Data were collected on potential risk factors, including ethnicity, renal diagnosis, first RRT modality, HIV status and public/private sector provision of RRT. Failure events included death and discontinuation of RRT without recovery of function. Patients were censored if they recovered renal function, emigrated or were lost to follow-up. Multivariable Cox regression was used to estimate adjusted hazard ratios. In the incident cohort (n=6187), the mean age was 51.8 years, 54% were Black, 44% were diabetic, 10% were HIV positive and 82% had haemodialysis as their first modality. Overall 1-year survival from day 90 was 90.4% (95%CI 89.6-91.2%). On multivariable analysis, survival was associated with age, renal diagnosis, diabetes and province. The 18-40-year age group and non-diabetics had improved survival. There was no association with ethnicity, first modality or healthcare sector. HIV status was missing in 20% of the cohort and was therefore omitted from the multivariable analysis. The crude 1-year survival rates of HIV-positive and negative patients were 95.7% and 93.8%, respectively, and much lower at 74.8% in patients without data on HIV. The absence of this optional data element seemed to identify sicker patients; those who survived for longer would be more likely to have their virological status captured by the registry. In the December 2015 prevalent cohort (n=10155), the mean age was 51.5 years, 52% were Black, 37% were diabetic, 8% were HIV positive, and 74% were on haemodialysis as their treatment modality. The overall 1-year survival was 90.1% (CI 89.4-90.6%). The crude survival rates of public and private sector patients were 93.4% and 88.4%, respectively. This was not significant on multivariable analysis, where survival was associated with age, diabetes, RRT vintage, and province. The 18-40-year age group, non-diabetics and those with RRT vintage >2.5 years had improved survival. The survival rates of South African patients who access RRT services are comparable to those in better resourced countries. Although access to government-supported, public sector RRT is limited, the patients who are accommodated have good survival rates as compared to patients at private facilities, even after adjusting for factors such as age and comorbid illnesses.

South African Renal Registry Annual Report 2017

The sixth annual report of the South African Renal Registry summarises the 2017 data on renal replacement therapy (RRT) for patients with end-stage renal disease (ESRD) in South Africa. In December 2017, the number of patients with ESRD who were treated with chronic dialysis or transplantation stood at 10 744, a prevalence of 190 per million population (pmp). The growing prevalence observed since the registry was established is due mainly to the increasing numbers of patients accessing haemodialysis in the private sector, where the prevalence was 855 pmp. In the public sector, which serves 84% of the South African population, the prevalence of RRT (66 pmp) remained below the level reported for 1994, so that the disparity in access continued to increase. The disparities between provinces remained, with Limpopo and Mpumalanga the most under-served, as did the disparities between ethnic groups, with Blacks being the most under-served group. The Western Cape was the province with the highest public sector treatment rates and was also where most of the country’s public sector kidney transplants were performed.

South African Renal Registry Annual Report 2016

The fifth annual report of the South African Renal Registry summarises the 2016 data on renal replacement therapy (RRT) for patients with end-stage renal disease (ESRD) in South Africa. In December 2016, the number of patients with ESRD who were treated with chronic dialysis or transplantation stood at 10 257, a prevalence of 183 per million population (pmp). The growing prevalence observed since the registry was established is due mainly to the increasing numbers of patients accessing haemodialysis in the private sector. In the public sector, which serves 84% of the South African population, the prevalence of RRT (68 pmp) has dipped below the level reported for 1994, so that the disparity in access continues to increase. The disparities between provinces remain, with Limpopo and Mpumalanga the most under-served, as do the disparities between ethnic groups, with Blacks being the most under-served group.

The state of renal replacement therapy for children in South Africa: Data from the first report of the re-established National Renal Registry.

The South African Renal Registry (SARR) was re-established in 2010. The first report was produced in 2014. It revealed that only 3182 patients out of 43.6 million people who were dependent on the state for medical care, received renal replacement therapy (RRT) in 2012 (73 per million population). To describe the state of RRT for children in South Africa in 2012. From the SARR report and 2012 dataset, a cross-sectional study was performed of children under 14years of age who received chronic dialysis, and incident renal transplants in 2012. Patient demographics, treatment modalities and outcome were recorded and RRT rates computed. Fifty-nine children received dialysis in South Africa in 2012, a rate of 3.8 per million age-related population (pmarp). The mean age was 9years 11months. The most common cause of end stage renal failure (ESRF) was acquired glomerular disorders (83%). Ninety percent of the children received treatment in two of the nine provinces. Six children (10%) were treated in the only private dialysis unit. Eleven patients received kidney transplants (19%): six private and five public sector patients. Sixteen patients (27.1%) died: seven due to cardiovascular and three due to cerebrovascular events. There was a low RRT rate of 3.8 pmarp for children in South Africa in 2012. Private sector patients were likely to receive more optimal treatment. The poor performance of the state health sector can largely be ascribed to a deficiency of funding for RRT facilities and trained personnel.

South African Renal Registry Annual Report 2015

The fourth annual report of the South African Renal Registry summarises the 2015 data on renal replacement therapy (RRT) for patients with end-stage renal disease (ESRD) in South Africa. The South African population increased to 54.96 million in 2015, from 54.00 million in 2014. In December 2015, the number of patients with ESRD who were treated with chronic dialysis or transplantation stood at 10 360, a prevalence of 189 per million population (pmp). The prevalence was 167 pmp in 2013 and 178 pmp in 2014. The increasing prevalence observed is due mainly to the increased numbers of patients accessing haemodialysis in the private sector. In the public sector, which serves 84% of the South African population, the prevalence of RRT (71.9 pmp in 2015) remains at levels close to those reported in 1994 so that the disparity in access continues to increase. The disparities between provinces remain, with Limpopo and Mpumalanga the most under-served, as do the disparities between ethnic groups, with Blacks being the most under-served group.

The story of the African Association of Nephrology (AFRAN)

The African Association of Nephrology was founded in Cairo on 28 February 1987, during the ISN-sponsored “African Kidney and Electrolytes Conference”, being hosted and co-sponsored by the Egyptian Society of Nephrology. Twenty-five physicians interested in kidney disease, from 13 African countries, constituted the core assembly that selected a steering committee composed of five members, representing the five geographical zones in Africa. The committee proposed the name the African Association of Nephrology (AFRAN), approved its logo, defined its mission, and drafted its constitution. All were ratified at the first General Assembly meeting held in London in July of the same year. The steering committee was re-elected to continue as the Executive Committee for the first cycle and mandated to set the scene for future meetings, publications and programmes. AFRAN congresses have been held regularly ever since, triennially for three cycles, then biennially with a few exceptions. Scientific meetings including Continuing Medical Education activities and hands-on workshops addressing local kidney and electrolyte disorders, have been held in most African countries, with generous logistical and financial support by the International Society of Nephrology (ISN). The abstracts of the first congress were published in Kidney International. Meeting proceedings were usually distributed by hand, thanks to representatives of pharmaceutical companies in the various African countries. A quarterly newsletter was edited and published in the Sudan, upgraded to a journal (the African Journal of Nephrology) in 1997 and self-published from Egypt until the editorial office moved to South Africa in 2012. A registry of nephrologists and dialysis units in Africa was compiled and published from Algeria in 1989, then updated in the Sudan a few years later. More recently, an African Renal Registry was established, now hosted in South Africa. Numerous fellowships were offered by the better-off countries to their emerging neighbours, being sponsored by international organizations, mainly the ISN. Joint research has been conducted mainly through these fellowships. By its 10th birthday, AFRAN had encompassed all African countries, to become the official pan-African federation of national renal societies. The ISN initiatives for supporting the developing world, originally operated under the umbrella of the Commission for the Global Advancement of Nephrology (COMGAN), were instrumental in supporting AFRAN’s foundation and sustainability. Besides the ISN, AFRAN became affiliated to many other regional and all national societies of nephrology, which qualified it to serve as the principal liaison between African nephrology and that in the rest of the world.

Correction: South African Renal Registry Annual Report 2015 - kidney transplants in KwaZulu-Natal

This correction serves to update the reported numbers of new kidney transplants performed annually since 2012 in the public sector in the province of KwaZulu-Natal.

A renal registry for Africa: first steps.

There is a dearth of data on end-stage renal disease (ESRD) in Africa. Several national renal registries have been established but have not been sustainable because of resource limitations. The African Association of Nephrology (AFRAN) and the African Paediatric Nephrology Association (AFPNA) recognize the importance of good registry data and plan to establish an African Renal Registry. This article reviews the elements needed for a successful renal registry and gives an overview of renal registries in developed and developing countries, with the emphasis on Africa. It then discusses the proposed African Renal Registry and the first steps towards its implementation. A registry requires a clear purpose, and agreement on inclusion and exclusion criteria, the dataset and the data dictionary. Ethical issues, data ownership and access, the dissemination of findings and funding must all be considered. Well-documented processes should guide data collection and ensure data quality. The ERA-EDTA Registry is the world's oldest renal registry. In Africa, registry data have been published mainly by North African countries, starting with Egypt and Tunisia in 1975. However, in recent years no African country has regularly reported national registry data. A shared renal registry would provide participating countries with a reliable technology platform and a common data dictionary to facilitate joint analyses and comparisons. In March 2015, AFRAN organized a registry workshop for African nephrologists and then took the decision to establish, for the first time, an African Renal Registry. In conclusion, African nephrologists have decided to establish a continental renal registry. This initiative could make a substantial impact on the practice of nephrology and the provision of services for adults and children with ESRD in many African countries.