Project Activities

Mapping the Changing Shape of Europe's Haemophilia Population

The advent and increased availability of safe factor concentrates has led to a marked improvement in life expectancy for people with haemophilia. A thorough understanding of the current demographic profile of the haemophilic population in Europe may be helpful in predicting future trends and ensuring appropriate provision of healthcare.

The ADVANCE Working Group is compiling comparative epidemiological data on the ageing haemophilia population from centres across Europe.

Fig 1. Age distribution of population with haemophilia A all centres - Data collated from independent demographic data from ADVANCE Working Group centres

Fig 2. Age distribution of population with haemophilia B across all centres - Data collated from independent demographic data from ADVANCE Working Group centres

Preliminary data from the survey suggest that many of those with haemophilia remain clustered in the younger age groups (less than 40 years of age). The number of those with severe haemophilia begins to decline in the late middle age years, with a steeper decline in numbers at older ages compared to the non-haemophilia population data. There are few individuals with severe haemophilia at advanced ages (>80 years).

This confirmation of the small numbers of individuals at advanced older age underlines the need for collaboration to achieve evidence-based recommendations for managing this population.

Extrapolating data for the younger age groups, suggests the likely progressive expansion of the numbers of people with haemophilia in late middle age and eventually at advanced age as a result of increasing life expectancy. Greater understanding of these age structures will help healthcare authorities across Europe in the planning and provision of future healthcare services.