Every three years since 2009, the EHC has carried out ‘Haemophilia Care in Europe’ surveys in order to determine the level of haemophilia treatment and care in countries across Europe, as well as to assess to what extent the European Principles of Haemophilia Care are reflected in reality. The results have allowed us to identify areas in need of improvement and to advocate for the addressing of these challenges on a European and national level. The data has also very meaningfully contributed to the establishment of the European Directorate for the Quality of Medicines (EDQM) Recommendations on haemophilia care, the latest set of which have been adopted as a Resolution by the Council of Europe.
This is why we would like to once again ask for your help in collecting data for our 2018 survey on Haemophilia Care in Europe. Please note that data from every country is relevant and useful and will support other countries in their advocacy.
The survey is composed of three parts and 34 questions and is available both as an online questionnaire and Word document. The survey can be filled either in English or Russian.
Please feel free to consult with the relevant stakeholders to fill in the survey, however, we would like to ask that you only send us back one set of answers per country.
The deadline to fill-in and return the survey is 31st of May 2018.
Consult the survey in English:
Consult the survey in Russian:
Europe is a disparate continent with a wide range of economic conditions and health systems in individual countries. In 2008, the European Principles of Haemophilia care were drafted by an interdisciplinary group of haemophilia physicians with input from key patient opinion leaders and endorsed by the EHC and the European Association for Haemophilia and Allied Disorders (EAHAD).
These principles are:
1. Establishment of a central haemophilia organisation in each country with supporting local group
2. National haemophilia patient registries
3. A network of multidisciplinary comprehensive care centres and complementary haemophilia treatment centres
4. Partnership of health care professionals and patients in the delivery of haemophilia care
5. Safe and effective concentrates at optimum treatment levels
6. Home treatment and delivery
8. Specialist services and emergency care
9. Management of inhibitors
10. Encouragement of education and research
In 2009, the EHC carried out a survey in order to determine the extent to which haemophilia care in across the continent of Europe compared with these principles. A total of 19 countries responded to the first survey. This survey identified significant gaps in terms of the provision of care in haemophilia within each country. The survey was repeated in 2012 with 35 countries responding and again in 2015 with 37 countries. Over these six years, with the significant increase in countries reporting a clearer picture of these disparities emerging. Whilst there have been increases in the availability of clotting factor concentrates (CFC), there are still 13 countries who remain below the EDQM minimum recommendations for CFC, with further 5 countries unable to provide data on CFC use due to lack of access to data.
The picture developing shows that countries with a highly organised system for delivering haemophilia care is capable of producing are level of care beyond their economic constraints. These are countries with good registries that record all people with haemophilia (mild, moderate, severe), have patient and clinician involvement in all aspects of care including decision-making on haemophilia care and choosing
haemophilia treatment products. These countries also include a well-defined network of comprehensive care centres and haemophilia treatment centres to treat patients effectively and optimise the use of CFC’s to maximise the benefits for patients.
You can access a heat map that displays (country by country) the 2015 survey results here.