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

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 (PR...

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Main Authors: Bladen Melanie, McDonagh Janet, McLaughlin Paul, Gooding Richard, Holder Kerry-Ann, Thind Sharon, Klooster Brittany, Shields Alan, Turner-Bowker Diane M., Chatterton Kaitlin, Leso Allison, Volpi Connor, Sivasubramaniyam Sujan, Abulizi Jiawula, Khan Nisa
Format: Article
Language:English
Published: Sciendo 2024-09-01
Series:The Journal of Haemophilia Practice
Subjects:
haemophilia
joint bleeds
self-monitoring
patient-reported outcomes
quality of life
Online Access:https://doi.org/10.2478/jhp-2024-0014
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Summary: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.
ISSN:2055-3390

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