Variation in health system performance for managing diabetes among states in India: a cross-sectional study of individuals aged 15 to 49 years

BACKGROUND: Understanding where adults with diabetes in India are lost in the diabetes care cascade is essential for the design of targeted health interventions and to monitor progress in health system performance for managing diabetes over time. This study aimed to determine (i) the proportion of adults with diabetes in India who have reached each step of the care cascade and (ii) the variation of these cascade indicators among states and socio-demographic groups. METHODS: We used data from a population-based household survey carried out in 2015 and 2016 among women and men aged 15–49 years in all states of India. Diabetes was defined as a random blood glucose (RBG) ≥ 200 mg/dL or reporting to have diabetes. The care cascade—constructed among those with diabetes—consisted of the proportion who (i) reported having diabetes (“aware”), (ii) had sought treatment (“treated”), and (iii) had sought treatment and had a RBG < 200 mg/dL (“controlled”). The care cascade was disaggregated by state, rural-urban location, age, sex, household wealth quintile, education, and marital status. RESULTS: This analysis included 729,829 participants. Among those with diabetes (19,453 participants), 52.5% (95% CI, 50.6–54.4%) were “aware”, 40.5% (95% CI, 38.6–42.3%) “treated”, and 24.8% (95% CI, 23.1–26.4%) “controlled”. Living in a rural area, male sex, less household wealth, and lower education were associated with worse care cascade indicators. Adults with untreated diabetes constituted the highest percentage of the adult population (irrespective of diabetes status) aged 15 to 49 years in Goa (4.2%; 95% CI, 3.2–5.2%) and Tamil Nadu (3.8%; 95% CI, 3.4–4.1%). The highest absolute number of adults with untreated diabetes lived in Tamil Nadu (1,670,035; 95% CI, 1,519,130–1,812,278) and Uttar Pradesh (1,506,638; 95% CI, 1,419,466–1,589,832). CONCLUSIONS: There are large losses to diabetes care at each step of the care cascade in India, with the greatest loss occurring at the awareness stage. While health system performance for managing diabetes varies greatly among India’s states, improvements are particularly needed for rural areas, those with less household wealth and education, and men. Although such improvements will likely have the greatest benefits for population health in Goa and Tamil Nadu, large states with a low diabetes prevalence but a high absolute number of adults with untreated diabetes, such as Uttar Pradesh, should not be neglected. ELECTRONIC SUPPLEMENTARY MATERIAL: The online version of this article (10.1186/s12916-019-1325-6) contains supplementary material, which is available to authorized users.