Development of annual joint bleeds and factor consumption during the last 6 years in 14 haemophilia centers - real life data from electronic documentation smart medication

Objective Electronic diary has shown to be a valuable tool for analysis of annual joint bleeding rate (AJBR) and annual factor VIII/IX consumption (AFC) in real life setting. What has changed over a six-year period?

Material and Methods AFC and AJBR among 391 patients with haemophilia A/B from 14 haemophilia centers in 2019 were compared to data to prior years (277 patients from 9 centers in 2017, both gradually increasing since then) according to electronic documentation smart medication.

Results Looking at five consecutive years, the average AFC (IU/kg BW) was 2442, 2701, 2575, 2670, 2924 and 2847 the average AJBR 2.1, 2.5, 2.3, 2.2, 1.9 and 1.7 between 2014 and 2019, respectively. Four groups, comparing above or below average AFC and AJBR, were compared between 2014 -2019: The majority (45%/40%/44%/45%/40%/42%) had an AJBR of ≤ 2 with less than average AFC, followed by a group (31%/35%/32%/32%/29%/28%) with ≤ 2 AJBR but above average AFC. A minor group (14%/11%/15%/15%/14%/14%) had an AJBR > 2 and more than average AFC. Only few (10%/14%/8%/8%/17%/15%) had an AJBR > 2 but less than average AFC.

Conclusion In 2019 the AJBR was slightly lower, the AFC slightly higher compared to all prior years. Whether this reflects changes in treatment or is due to an increasing number of participating patients and centers needs to be further analyzed. With the introduction of extended half-life products, the future bleeding and factor consumption may change, demonstrating the necessity for ongoing electronic surveillance in haemophilia care.

Publication History

Article published online:
18 June 2021