The total cost of HD-related care was I$ 63.2 million, accounting for 3.1% of all claim expenses during the study period. A total of I$ 59.9 million was spent on HD and I$ 4.26 million on vascular access procedures. An additional I$ 3.26 million was spent on hospitalizations for other indications in these patients. The mean annual expenditure per patient on HD-related care was I$ 4821 ( Supplementary Table S3 ). In aggregate, HD-related expenditure as a proportion of all RACHIS claims increased 7-fold, from 0.75% in 2008 to 5.2% in 2012 ( Figure 3 ). Supplementary Tables S4 and S5 show details of indications for hospitalization and associated costs.

Of all the subjects who started HD, 2.3% received a kidney transplantation, 17.1% were reported as dead, and 63.5% had ceased treatment of their ESKD (i.e., stopped reporting to dialysis centers). After 6 months of HD, 10.2% had died, and 36.2% ceased treatment ( Table 3 ). The median duration that the incident population received HD was 170 days for females and 198 days for males. For patients who did not drop out, the median survival was 1320 and 1372 days for females and males, respectively ( Figure 2 ). The hazard ratio (95% confidence interval) for the risk of death or discontinuation was 0.95 (0.92–0.99) for males compared with females, 1.005 (1.003–1.006) for each year increase in age and 1.07 (1.03–1.12) for those using services at public versus private dialysis centers.

A total of 15,064 hospitalizations were recorded in this population, 11,991 (79.6%) before starting HD. The majority (56%) of pre-HD hospitalizations were for medical management of chronic renal failure, either for starting dialysis or confirmation of diagnosis. After starting HD, hospitalizations were for the management of HD-related complications or for kidney transplantation.

The number of dialysis units for every 100 recipients of ESKD receiving treatment ranged from 0 to 1.89 across districts of AP, with only 6 of 23 districts having more than 1 dialysis unit for 100 residents ( Supplementary Table S2 ).

The number of centers providing HD increased from 50 in 2008–2009 to 89 in 2011–2012 ( Supplementary Table S1 ). This was paralleled by an increase in uptake, as shown by the incidence of new patients accessing HD, from 29.5 per million of the population in 2008 to 69.8 per million of the population in 2012 ( Figure 1 ). Overall, the number of patients who received HD for ESKD increased from 29.5 per million of the population in 2008–2009 to 122.2 per million of the population in 2011–2012.

A total of 13,118 beneficiaries (1.4% of all claimants) received HD for ESKD during the study period, with 63.6% seeking care predominantly at private centers. Table 1 summarizes the key findings on patient attributes and utilization patterns. The majority (73.4%) of patients were males, and the gender gap increased with age ( Table 2 ). Approximately half of the patients were between the ages of 40 and 60 years. The mean age at start of HD was slightly lower for females (42.9 vs. 44.4 years; P < 0.001).

Discussion

This is the first large-scale study to present population-based data on utilization of HD and outcomes of care for ESKD in India. Our data came from more than 68 million people who were eligible to receive free care, constituting more than 80% of the population in the undivided AP.

The year-on-year increase in uptake in treatment suggests that programs such as this are making inroads in addressing the high unmet need for dialysis, albeit at the cost of a significant economic burden on the health system.

6 Saran R.

Robinson B.

Abbott K.C.

et al. US Renal Data System 2016 annual data report: epidemiology of kidney disease in the United States. A notable finding is the poor survival and high drop-out rate, with only 53% patients continuing dialysis for >6 months. Even the dropout and transplant–censored survival was below the global standards. According to the United States Renal Data System Report, the expected remaining lifespan on dialysis is approximately 10.5 years for dialysis patients 40–44 years of age and approximately 5.5 years for those aged 60–64 years.

7 Ashuntantang G.

Osafo C.

Olowu W.A.

et al. Outcomes in adults and children with end-stage kidney disease requiring dialysis in sub-Saharan Africa: a systematic review. A recent systematic review from Africasuggested high mortality and dropouts among patients who received dialysis for ESKD. Overall, only approximately 10% of African adults with incident ESKD continued dialysis for more than 3 months, with patients stopping dialysis after a mean of 6.5 sessions only. Only a minority of patients received financial support for their dialysis, unlike in the present report.

8 Parameswaran S.

Geda S.B.

Rathi M.

et al. Referral pattern of patients with end-stage renal disease at a public sector hospital and its impact on outcome. The high dropout rates, most of them early in the course of treatment, deserve closer examination. Because we were able to track all unique patients across different dialysis facilities, the likelihood that any patient would be continuing dialysis elsewhere or received a transplant using their own funds either within or outside the jurisdiction of RACHIS is extremely low. Therefore, such dropouts can be safely assumed to have culminated in death. These data are consistent with previous single-center reports from India.Finally, it is possible that some patients with acute kidney injury were miscoded as having ESKD but recovered kidney function sufficiently to discontinue dialysis.

9 Ramachandran R.

Jha V. Kidney transplantation is associated with catastrophic out of pocket expenditure in India. Given that treatment through this program was provided without charge, factors other than the cost of dialysis itself likely contributed to early discontinuation, especially in the rural populations. They could include out-of-pocket expenses for travel to dialysis units; management of associated conditions (anemia, abnormalities of bone and mineral metabolism, blood pressure, and nutrition) and comorbidities, the costs of which were not covered by the scheme; loss of income; and caregiver burden. RACHIS covered only one set of laboratory tests per month. Previous studies have shown that the catastrophic cost burden associated with long-term dialysis treatment is a major contributor to cessation of treatment and inequity in access to care.

The annual spend per patient was low in comparison with that reported from other countries (US$ 89,900 in the United States, AU$ 65,000 in Australia, US$ 12,100 in Thailand, and US$ 9112 in Brazil). One consequence of the low spend may be the poor patient survival observed in this study. The reimbursement rates were decided by the government without any formal costing analysis to determine a model that will provide an essential level of quality. Given limited resources available, maintaining a low-cost model of care while meeting a minimum acceptable level of service quality is critical for enabling a basic level of access. Our analysis suggests that the current model of insurance coverage does not adequately address all the barriers to long-term care that lead to optimum survival. Overcoming these barriers is likely to increase the cost of care, hence understanding the gains from such investment in terms of enhanced patient survival and productivity is important.

The data also suggest residual inequities in the care of females with ESKD. Although men outnumber women among the dialysis population in almost all geographic regions, the overrepresentation of men (3:1) in this study was striking, suggesting that social determinants are influencing the disparities. It is possible that a larger proportion of women in this population either are not diagnosed or do not present for treatment. Even those females who entered the HD program were more likely to cease treatment than males, perhaps because, in these cases, households are less willing to bear the out-of-pocket costs of ongoing medications.

4 Treerutkuarkul A. Thailand: health care for all, at a price. State-funded dialysis programs for patients with ESKD are being increasingly adopted as part of universal health care provision in low- and middle-income countries.The findings presented here are of significance, because the recently announced National Dialysis Program in India envisages provision of free dialysis to the poor using a public–private partnership model akin to the one evaluated in this study. However, the suboptimal outcomes suggest the need to make dialysis more accessible through participative approaches. Community-focused models of dialysis delivery, such as peritoneal dialysis and satellite dialysis units, need to be developed. The financing model, especially in terms of the ancillary costs, and oversight in terms of overall quality of care need evaluation to ensure that dialysis programs can deliver acceptable outcomes. Other urgent needs include development of a program of care that includes early detection and prevention of kidney disease, better care of those with pre-dialysis chronic kidney disease, and expansion of the transplant program. Finally, success of ongoing efforts to develop low-cost but robust and sustainable dialysis delivery systems ( https://www.ellenmedical.com/ ) could be particularly relevant for emerging economies.

Our study has several strengths: it covered a large beneficiary population that is unlikely to have gone outside of the network for expensive treatment, such as dialysis. For the same reason, we were able to establish the outcomes with a high degree of confidence. We were able to perform a comprehensive cost calculation that included not only the cost of dialysis treatment but also ancillary services. The weaknesses were related to the nature of the data. The source of information was claims data, without any link to medical records. Hence, we were unable to get information on comorbidities, causes of death, medication use, dialysis quality, and complications. We were also unable to determine the characteristics of patients who discontinued dialysis—whether these people had been referred late, had to travel long distances, belonged to very poor rural communities, or had inadequate family support. Because participants were recruited in hospitals, we were unable to account for patients who might have developed ESKD but did not access HD at all.

In conclusion, removal of out-of-pocket of cost leads to increase in uptake of HD, confirming a previously high unmet need. The high mortality and dropout rates suggest that insurance coverage does not address all inequities in access and the barriers to maintaining long-term care. Prospective studies are needed to identify reasons for dialysis discontinuation and death; and to identify factors that will promote patients to continue dialysis and improve quality of life and rehabilitation status. Such factors may need to be specifically tailored for women. In projecting the future financing needs for dialysis treatment within the context of universal health coverage, the study illustrates that meeting the previously high levels of unmet need will be a significant driver of cost, and the imperative will be on expanding coverage and promoting survival while maintaining a low-cost model of dialysis care.