BackgroundIndia lacks a national birth defects surveillance. Data on the prevalence of congenital anomalies are available mostly from hospital-based, cross-sectional studies. This is the first cohort study from India, where 2107 women were followed till pregnancy outcome, in order to measure the prevalence and types of congenital anomalies, their contribution to neonatal mortality, implications for surveillance, and the health service needs for prevention and management.MethodsThe study followed a cohort of 2107 pregnant women till outcome which was miscarriage, termination of pregnancy, live or stillbirth, neonatal and post-neonatal mortality. Case ascertainment of congenital anomalies was done through visual examination, followed by various investigations. Rates of congenital anomaly affected births were reported per 10 000 births. Health service needs were described through retrospective analysis of events surrounding the diagnosis of a congenital anomaly.ResultsAmong 1822 births, the total prevalence of major congenital anomalies was 230.51 (170.99–310.11) per 10 000 births. Congenital heart defects were the most commonly reported anomalies in the cohort with a prevalence of 65.86 (37.72–114.77) per 10 000 births. Although neural tube defects were two and a half times less as compared to congenital heart defects, they were nevertheless significant at a prevalence of 27.44 (11.73–64.08) per 10 000 births. In this cohort, congenital anomalies were the second largest cause of neonatal deaths. The congenital anomaly prenatal diagnosis prevalence was 10.98 per 1000 births and the congenital anomaly termination of pregnancy rate was 4.39 per 1000 births.ConclusionsThis first cohort study from India establishes that the congenital anomaly rates were high, affecting one in forty four births in the cohort. The prevalence of congenital anomalies was identical to the stillbirth prevalence in the cohort, highlighting their public health importance. The results of this study identify the need for a well defined national programme with components of prevention, care and surveillance.

Citation: Gund P, Bhide P, Kar A (2016) AbstractObjective: This study aimed at determining the prevalence of selected periconception (pre-and early-post conception) risk factors for adverse pregnancy outcomes among urban Indian women, in order to identify the targets of a preconception education programme.Methods: Data on selected risk factors for adverse pregnancy outcomes was collected through face to face interview of 2107 pregnant women. Odds ratios (OR) were computed in order to identify the characteristics of women with higher numbers of risk factors. Results:The most prevalent risk factors were nutritional (lack of preconception folic acid supplement use 99.7%, anaemia 61% and malnutrition 41%), followed by social factors (low education levels 62%, low socioeconomic status 68%). There was high prevalence of chemical exposures in the household environment (household cleaners 76%, use of indoor insect repellents 64%). Women from families below the poverty line (OR 1.3, 95% CI 1.0-1.6) and with low education levels (OR 1.4, 95% CI 1.1-1.6) were more likely to report five or more risk factors. Conclusions:The high prevalence of risk factors for adverse pregnancy outcomes identifies the need for health promotion messages targeted at women in the preconception period with emphasis on pre pregnancy nutrition, and on limiting risk exposures within the household environment. The study identified a need to specially focus on poorly educated women from families below the poverty line.

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In low-income countries, haemophilia treatment is not supported by national health services. Data on the burden of out-of-pocket (OOP) expenditure on households are unavailable from these countries. This study measured the OOP expenditure on treatment of haemophilia by Indian households. We used 20 weeks of follow-up data of 24 haemophilia A patients to estimate the annual bleeding rate for each patient and the actual OOP expenditure on treatment. We used this observational data to calculate the annual OOP expenditure on treatment if all bleeding episodes were to be treated with clotting factor concentrate. Using previously published methodology, we estimated if the expenditure was catastrophic to households or not. The observed monthly expenditure on treatment ranged from 1.5% to 12% of monthly income as not all bleeding episodes were treated with clotting factor concentrate. The estimated monthly expenditure if all bleeding episodes occurring over 1 year were to be treated would range from 21 to 314 times the monthly income of families. Nearly 68% of households would have experienced catastrophic expenditure. Treatment for haemophilia results in significant OOP expenditure for households, which is avoided by not providing standard treatment to patients. There is a need to mobilize prevention and care services for haemophilia in India and other low-income countries to mitigate the suffering due to lack of affordable treatment.

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