TY - JOUR
T1 - Adherence to prophylaxis and bleeding outcome in haemophilia
T2 - A multicentre study
AU - Schrijvers, Liesbeth H.
AU - Beijlevelt - van der Zande, Marlene
AU - Peters, Marjolein
AU - Lock, Janske
AU - Cnossen, Marjon H.
AU - Schuurmans, Marieke J.
AU - Fischer, Kathelijn
PY - 2016/8
Y1 - 2016/8
N2 - Prevention of bleeding and joint damage in severe haemophilia is dependent on adherence to prophylactic replacement therapy. The aim of this study was to assess adherence to prophylaxis, including associations with age, bleeding and clotting factor consumption (CFC). In three Dutch haemophilia centres, semi-structured interviews about adherence to prophylaxis in the previous 2 weeks were conducted with patients or parents of a child with haemophilia. Patients were classified, according to pre-specified definitions, as adherent, sub-optimally adherent or non-adherent based on missing, timing, and dose of infusions. Association of annual bleeding rates, mean CFC, person performing the infusion (parents verus patients) with adherence categories were analysed. Overall, 241 patients with haemophilia using prophylaxis were studied. Parents were more adherent (66%; n = 48/73) than patients (43%; n = 72/168). Sub-optimal adherence occurred in 29% of parents and 37% of patients and was characterized by changes in timing of infusion (mostly from morning to evening), while missing
AB - Prevention of bleeding and joint damage in severe haemophilia is dependent on adherence to prophylactic replacement therapy. The aim of this study was to assess adherence to prophylaxis, including associations with age, bleeding and clotting factor consumption (CFC). In three Dutch haemophilia centres, semi-structured interviews about adherence to prophylaxis in the previous 2 weeks were conducted with patients or parents of a child with haemophilia. Patients were classified, according to pre-specified definitions, as adherent, sub-optimally adherent or non-adherent based on missing, timing, and dose of infusions. Association of annual bleeding rates, mean CFC, person performing the infusion (parents verus patients) with adherence categories were analysed. Overall, 241 patients with haemophilia using prophylaxis were studied. Parents were more adherent (66%; n = 48/73) than patients (43%; n = 72/168). Sub-optimal adherence occurred in 29% of parents and 37% of patients and was characterized by changes in timing of infusion (mostly from morning to evening), while missing
KW - Adherence
KW - Chronic
KW - Hemophilia
KW - Prophylaxis
KW - Von Willebrand
UR - http://www.scopus.com/inward/record.url?scp=84963963411&partnerID=8YFLogxK
U2 - 10.1111/bjh.14072
DO - 10.1111/bjh.14072
M3 - Article
C2 - 27098446
AN - SCOPUS:84963963411
SN - 0007-1048
VL - 174
SP - 454
EP - 460
JO - British Journal of Haematology
JF - British Journal of Haematology
IS - 3
ER -