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

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

doi:10.2478/jhp-2024-0014

The Journal of Haemophilia Practice (Sep 2024)

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

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

Affiliations

Bladen Melanie: Great Ormond Street Hospital for Children NHS Foundation Trust, London, UK.
McDonagh Janet: Manchester Academic Health Science Centre, University of Manchester, Manchester, UK; National Institute for Health Research Biomedical Research Centre, Manchester University Hospital NHS Trust, Manchester, UK
McLaughlin Paul: Katharine Dornandy Haemophilia Centre and Thrombosis Unit, Royal Free London NHS Foundation Trust, London, UK
Gooding Richard: Haemophilia Comprehensive Care Centre, Belfast Health and Social Care Trust, Belfast City Hospital, Belfast, UK
Holder Kerry-Ann: Child Health Psychology, Inherited Bleeding Disorders and Hereditary Anaemias, Noah’s Ark Children’s Hospital for Wales, Cardiff, UK
Thind Sharon: Oncology and Haemotology, Alder Hey NHS Foundation Trust, Liverpool, UK
Klooster Brittany: Adelphi Values Patient-Centered Outcomes, Boston, MA, US
Shields Alan: Adelphi Values Patient-Centered Outcomes, Boston, MA, US
Turner-Bowker Diane M.: Adelphi Values Patient-Centered Outcomes, Boston, MA, US
Chatterton Kaitlin: Ultragenyx Pharmaceutical, Novato, CA, US
Leso Allison: Adelphi Values Patient-Centered Outcomes, Boston, MA, US
Volpi Connor: Adelphi Values Patient-Centered Outcomes, Boston, MA, US
Sivasubramaniyam Sujan: CSL Behring, London, UK
Abulizi Jiawula: CSL Behring, London, UK
Khan Nisa: CSL Behring, London, UK

DOI: https://doi.org/10.2478/jhp-2024-0014
Journal volume & issue: Vol. 11, no. 1
pp. 108 – 122

Abstract

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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.

Published in The Journal of Haemophilia Practice

ISSN: 2055-3390 (Online)
Publisher: Sciendo
Country of publisher: Poland
LCC subjects: Medicine: Internal medicine: Specialties of internal medicine: Diseases of the blood and blood-forming organs
Website: https://sciendo.com/journal/JHP?tab=-aims-scope

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