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Lost in Numbers: Elusive Data on Chronic Kidney Disease in India

By Maya Annie Elias
on May 2, 2024

In recent decades, Chronic Kidney Disease (CKD) has become a global public health concern.  That is no different in my country, India. As per the 2019 Global Burden of Disease study, India now has the highest number of deaths due to CKD, followed by China and Japan. True, we do have a lot of people in India, but there’s more to it, unfortunately. Hypertension and diabetes are reported to be the most common risk factors for CKD in India. We also face the challenge of CKDu (CKD with unknown aetiology) in different parts of India, where a large number of CKD cases are reported among people without a history of hypertension or diabetes.  Possible causes for CKDu in these settings include the presence of heavy metals in drinking water, pesticide usage without protective measures, heat stress and air pollution.

In resource-constrained healthcare systems like India’s, it’s vital to have accurate data on the prevalence and management of CKD in order to address this public health challenge. However, accurate statistics regarding the prevalence of the illness, the number of people on kidney replacement therapies, and other critical indicators currently remain elusive. Policy makers and academicians often rely on prediction studies or hospital-based studies to estimate the burden of CKD and its epidemiological patterns. However, the reality may be far worse than these studies suggest, with a potentially greater burden than currently acknowledged. Unlike other chronic conditions, CKD often goes undetected until its advanced stages, making it difficult to have accurate prevalence data. Inconsistency in definitions and diagnostic indicators used in different research studies  and programmes poses another challenge for estimating the exact burden of CKD and related epidemiological patterns.

Currently we do not have a robust surveillance system  or standardized reporting mechanism for CKD in India.  Data available from the government sector capture only the number of people undergoing haemodialysis from Government-run dialysis centres, and exclude individuals taking treatment for early stages of the disease and availing dialysis services in other settings. In a country where more than half of the population seek healthcare from the private sector, accurate data are thus lacking on the number of people receiving haemodialysis from private institutions or on those in the early stages of CKD seeking care from private facilities. We have a kidney transplant registry, which provides key statistics regarding the kidney transplant surgeries conducted in the country. However, there are no accurate data on the number of people undergoing peritoneal dialysis.     .

The absence of comprehensive data on CKD prevalence, its epidemiological patterns,  and management poses significant challenges to policymakers, researchers, and healthcare providers alike. Without a clear understanding of the scale and scope of the (growing) CKD epidemic, it is tough to develop targeted interventions, allocate financial and healthcare resources effectively, and monitor progress towards reducing the burden of the disease. Furthermore, the lack of accurate data constrains opportunities for research and innovation in CKD prevention, diagnosis, and treatment.

Addressing the dearth of data on CKD in India will require a multifaceted approach that involves collaboration among government agencies, healthcare providers, researchers, and advocacy groups. Establishing comprehensive national registries and surveillance systems for CKD, standardizing data collection protocols, and implementing innovative strategies for data capture in both clinical and community settings are essential steps toward improving our understanding of this condition. Some welcome initiatives have already been undertaken by professional medical associations and research groups, such as the Indian CKD registry and India Dialysis registry, which were established to capture the information regarding the epidemiology of CKD. However, making these initiatives comprehensive, up to date and sustainable will require significant time, resources and commitment from all stakeholders involved. In addition to these, large-scale community based research studies are required to understand the true burden and causes associated with CKD. Last but not least, efforts to enhance public awareness and education about CKD, its risk factors, and preventive measures can help promote early detection and intervention, thus enabling timely data and ultimately, reducing the burden of disease.

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