Over the last decade, CKD has been recognized as a major global public health problem . Data from different parts of the world have confirmed the contribution of CKD towards the development of CVD and mortality . Moreover, CKD management consumes a disproportionately large fraction of the available healthcare resources .
Registries provide information about incidence, prevalence, demographic data, etiologic patterns, comorbidities and outcomes, and help generate trends that permit identification of priority areas and long term planning. In some countries, ESRD treatment funding is linked to submission of data to the registries whereas the contribution is voluntary in others. In view of the growing importance of lower stages of CKD, setting up of CKD Registries has also been advocated .
India does not have established program to manage CKD patients or even to collect data . Healthcare delivery takes place through both public and private systems . Subsidized public sector healthcare is provided though the primary health centers, block and district level hospitals, and referral (university) hospitals. Care for kidney disease is available only at the higher-level hospitals. There is no formal referral system; patients can go to any hospital, including to referral hospitals anywhere in the country. A shortage in the number of publicly funded specialized hospitals forces patients to seek care in expensive private hospitals. A vast majority do not have access to health insurance, and hence have to fund treatment from their own resources . Lack of any government support to dialysis has prevented the development of ESRD registry in India.
This report is the result of a comprehensive effort to understand the pattern of CKD across the entire range of healthcare delivery system, and presents the first comprehensive pan-Indian account of CKD. This voluntary effort was successful, as attested by regular contribution of data from an increasing number of centers across the country.
The registry confirms diabetic nephropathy as the pre-eminent cause of CKD in India . Until a couple of decades ago, the primacy of diabetes as the main cause of CKD was restricted to private Institutions that were patronized by the relatively affluent sections of the society . Currently, however, diabetic kidney disease is recognized as the most frequent cause of CKD across the country. This has paralleled the emergence of India as the diabetes capital of the world . With increasing urbanization, the number of diabetics is likely to rise, and an increase in the number of patients with kidney disease is to be expected. This is a call to action for professional societies, public health professionals and policy-makers to develop strategies to deal with this issue at an early stage.
The other important finding is the identification of CKD of undetermined etiology as the cause in as many as 16% of all CKD subjects. In older reports [2, 3, 5], this diagnostic category was not recognized. Patients in this category presented more frequently with advanced CKD, relatively short history, few symptoms until late in the disease, absent or mild hypertension and little or no proteinuria. There was no geographic pattern in this diagnosis. It can be postulated that delayed presentation due to limited access to healthcare makes establishing the primary diagnosis difficult. Unique risk factors in the Indian population must be considered, however. These include dietary habits, use of indigenous medicines and possibility of industrial contamination. A significant proportion of population in this region consumes a variety of herbs and fruits. Whether any of these have an adverse impact on kidney function remains unknown. An association of CKD with herbal medicines has already been established in some parts of the world [27, 28].
CKD of uncertain etiology has also been reported from other parts of South Asia and amongst South Asians living in UK . In Sri Lanka, male paddy farmers of poor socioeconomic status present with progressive non-proteinuric renal failure . Suggested etiologies include environmental toxins such as residual pesticides, fluoride, aluminum, cadmium and cyanobacteria in drinking water. Such observations argue against the assumption that CKD is primarily because of westernization and more likely to be encountered in the affluent urban population. Maternal malnutrition and resultant low birth weight in the offspring might predispose to CKD, possibly due to low nephron numbers.
This finding presents a challenge for developers of CKD detection programs, as these patients do not exhibit the usual parameters that define high risk for CKD such as hypertension or diabetes and do not demonstrate proteinuria.
The report highlights difference in the CKD population presenting to private or public sector hospitals. The CKD population in the public sector hospitals was comprised of a higher proportion of younger patients from poorer socioeconomic classes presenting in stages V CKD of uncertain etiology. There was no difference in the proportion of diabetic kidney disease, contrary to that noted in some of the earlier reports [2, 3, 5].
Over 60% of Stage V CKD patients were being managed with conservative treatment without dialysis at the time of presentation. Previous studies have shown that a large proportion of these cases require emergency dialysis soon after presentation but are unable to continue it on a long-term basis because of financial reasons [31, 32]. Moreover, late presentation results in catastrophic "out of pocket" expenditure , pushing many already poor families into abject poverty . This is an important issue for the Indian healthcare administrators. Should a developing country like India, with a high burden of infectious diseases, deficiency disorders and other public health challenges, offer universal renal replacement therapy (RRT)? A number of countries with comparable stage of economic development in South America and East Asia already do so. Even in India, some states have started programs to provide either highly subsidized or free RRT to its citizens [34, 35]. However, data suggest that the implementation of such programs is incomplete, and a large majority even in these states still are not yet covered. The Government of India is currently considering providing dialysis to the entire population through a network of standalone centers through partnership with private healthcare providers . There is, however, a shortage of trained dialysis physicians, technicians and nurses, for which training program are being devised.
The strengths of this report are its pan-Indian nature, the large number of participating centers from private and public sector healthcare facilities (including all the major medical Institutions of the country), use of uniform diagnostic labels, the large patient numbers and the consistency of data. An important reason for differences in the earlier reports could have been variable interpretation of clinical data for application of diagnostic labels. Adoption of a set of diagnostic criteria for making etiologic diagnosis by the registry participants was an important initial step in the current exercise. As there in no formal system of referrals or reimbursement, a majority of patients go from hospital to hospital in search of the most cost-effective treatment; hence appropriate measures were taken to ensure identification and removal of duplicate data. So far as representation of Stage V CKD is concerned, the report included cases irrespective of whether they received dialysis, which is different from ESRD registries elsewhere, which provide an account only treated cases.
This report has limitations too. Since the data has been contributed only by nephrologists, patients with more advanced stages of CKD are over-represented. It is not possible to calculate the incidence or prevalence of CKD from the registry because the data is hospital-based. Contribution to the registry was voluntary and despite strenuous efforts, the reach does not cover every nephrologist or even every patient from all participating centers. Theoretically, it can be said that as all stage V CKD patients will eventually present to a nephrologist, it should be possible to get the ESRD incidence and/or prevalence if data from all nephrologists in a region were to become available. Such a strategy allowed calculation of ESRD incidence in the city of Bhopal where one hospital served a defined population . However, experience suggests that a significant number of cases, especially from the underprivileged sections of the society do not reach the attention of a nephrologist and hence these figures will likely underestimate incidence and/or prevalence data. This is a cross-sectional analysis, and it is possible that some of the patients with advanced CKD who were on conservative therapy without dialysis could have been initiated on RRT at a later date.
Overall, the findings show that despite some variations, the demographic pattern and etiologic break-up of CKD is largely uniform throughout the country. This is important, as it would support the development of a coherent national strategy to deal with CKD as a nation-wide public health problem. One of the major challenges is ensure that more cases come to attention in the earlier stages of CKD through institution of CKD detection initiatives so that appropriate preventive steps can be undertaken, and to provide optimal care to a larger proportion of those who reach advanced CKD stages.
More research is needed to understand specific issues, such as specific differences between CKD in rural and urban dwellers and risk factor analysis in those with unexplained CKD. More detailed in-depth analysis will permit better understanding of factors such as age, ethnicity, level of development and poverty in different regions on CKD burden, causes and management. It would also be useful to concentrate on areas with good penetration of the registry, as this will allow a clearer understanding of the disease burden, more information on longitudinal course of patients which will permit better risk factor and outcome analysis.