Effect of acute bleeding on daily quality of life assessments in patients with congenital hemophilia with inhibitors and their families: Observations from the dosing observational study in hemophilia

摘要

Introduction: Quality-of-life (QOL) assessments in frequently bleeding patients with congenital hemophilia with inhibitors and their families are confounded by preexisting arthropathy and family circumstances. Periodic QOL assessments typically made on nonbleed days may not provide complete reflections of the burden on patients/families. Aim: To evaluate the impact of bleeding episodes on patients/caregivers/families and the association between monthly QOL scores and patients' average diary experiences. Methods: Frequently bleeding inhibitor patients (