Background: Annual joint bleeding rate (AJBR) and annual factor VIII/IX consumption (AFC) differ
widely among patients with severe haemophilia. The year to year pattern may, however,
be similar.
Methods: AFC and AJBR were compared among 277 patients with haemophilia A/B from 9 haemophilia
centers between 2014 and 2017 according to electronic documentation smart medicationTM.
Results: The average AFC (IU/kg BW) was 2442, 2701, 2575 and 2670, the average AJBR 2.1, 2.5,
2.3 and 2.2 between 2014 and 2017, respectively. Four groups, comparing above or below
average AFC and AJBR, were compared between 2014 -2017: The majority (45%/40%/44%/45%)
had an AJBR of ≤ 2 with less than average AFC, followed by a group (31%/35%/32%/32%)
with ≤ 2 AJBR but above average AFC. A minor group (14%/11%/15%/15%) had an AJBR >
2 and more than average AFC. Only few (10%/14%/8%/8%) had an AJBR > 2 but less than
average AFC.
Conclusions: Between 2014 and 2017 a majority of patients (75-77%) had an AJBR of ≤ 2 as a result
of sufficient home treatment. A minor group (8-14%) may require increased factor dosing
due to frequent bleeding and below average AFC. Smart medicationTM enables to online focus on patients difficult to treat due to above average AJBR
in spite of above average AFC (11-15%). The results were similar during four consecutive
years.