Descriptive epidemiology of haemophilia in Maharashtra, India

Secondary data on haemophilia cases in the state of Maharashtra, India were compiled and analysed. A total of 2192 haemophiliacs could be accounted from case papers and pedigrees, representing approximately 60% of the estimated number of cases in the state. Ratio of haemophilia A to haemophilia B was 4.2:1. Severe haemophiliacs constituted the majority of haemophilia A and B cases. About 70% of patients did not report any family history. Age distribution of cases suggested that the longevity of severe haemophiliacs was less than 30 years. Geographical distribution revealed clustering of cases around three established haemophilia clinics, with large parts of the state showing no cases. Although the cumulative number of cases showed an ascending trend, there was a 90% decrease in the number of cases registered between 1989 and 2000, suggesting that case recruitment from areas around the facilities had been achieved. Most cases showed delayed diagnosis, as the majority of severe haemophiliacs was being diagnosed at around 11–15 years of age. However, increasing awareness about haemophilia was reflected in a four‐fold increase in referrals of severe cases over a 10‐year period and increased registration of cases under 5 years of age. This study highlights that haemophilia services in India are still in their infancy, and increased awareness among healthcare providers as well as expansion of treatment facilities are still the primary areas for improvement of treatment.