Resource utilisation in haemophiliacs treated in Europe: results from the European Study on Socioeconomic Aspects of Haemophilia Care. The European Socioeconomic Study Group.

The objectives of our study was to answer the following questions: (1) What are the socioeconomic costs and benefits of different haemophilia treatment strategies? (2) Which savings can be achieved through a comprehensive care program? (3) How are haemophiliacs integrated into their social life? (4) What are the annual costs of treating haemophilia from a third party payer perspective? In this cross-sectional study, 840 consecutive haemophiliacs attending 16 haemophiliac treatment centres in 10 European countries at were entered in the study. The following six parameters were analysed: sociodemographic patient data, the type of substitution (on demand or prophylaxis), transfusion-transmitted diseases, the functional joint status, quality of life as well as the total costs of therapy. Three kinds of substitution modalities were distinguished: on demand therapy, pure and modified prophylaxis. The average number of medical visits, the average length of hospital stay, regular drug therapy and the average number of days off work per bleeding joint were recorded from the medical charts as a basis for the subsequent assessment of the costs of therapy. The total study sample comprised of 566 patients. Interestingly, statistically more significant (P = 0.0005) patients were unemployed in the on-demand group (14%) than in the prophylaxis group (3.4%). There was a higher ratio of white collar workers in the on-demand group as compared to the prophylaxis group and vice versa for blue collar workers. The distribution of blue collar workers, clerk, self-employed persons, students and housemen were quite comparable between the patients of the on-demand and prophylactic therapeutic regimen. The labor force participation rate was 55.2% in the patients in the on demand and 59.3% in the patients in the modified prophylactic group. The labor force participation rate across all patients was 56%. Patients on demand therapy used on average 38.3 (median: 12.5) units/kg/week as compared to 68.6 (median: 6) units/kg/week in the prophylaxis group. The mean usage across all patients was 46.1 (median 19.7) units/kg/week. There were an average of 7.4 (median: 3) joint bleeds per patient across all patients during the 6-month observation period. In the on-demand group 8.8 (median: 5) joint bleeds were recorded versus 3.1 joint bleeds (median: 0) in the prophylactic group. This difference was statistically different (95% CI of difference: 4.33-7.07). Our data suggest that patients receiving prophylactic clotting factor therapy require less additional health care resources, mainly due to the reduction in the number of joint bleeds.