Development of a patient-reported outcomes tool to monitor changes in joint health and wellbeing for young people with haemophilia B

Early detection of joint bleeds is challenging yet critical for preserving joint health among individuals with haemophilia. This work explored early indicators of joint bleeds and young people with haemophilia B (YPwHB) self-monitoring practices to develop a joint health patient-reported outcome (PRO) tool for YPwHB aged between 8-25 years.