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

Authors

Melanie Bladen

melanie.bladen@gosh.nhs.uk

Great Ormond Street Hospital for Children NHS Foundation Trust, London, UK

Janet McDonagh

Manchester Academic Health Science Centre, University of Manchester, National Institute for Health Research Biomedical Research Centre, Manchester University Hospital NHS Trust, Manchester

Paul McLaughlin

Katharine Dornandy Haemophilia Centre and Thrombosis Unit, Royal Free London NHS Foundation Trust, London, UK

Richard Gooding

Haemophilia Comprehensive Care Centre, Belfast Health and Social Care Trust, Belfast City Hospital, Belfast, UK

Kerry-Ann Holder

Child Health Psychology, Inherited Bleeding Disorders and Hereditary Anaemias, Noah’s Ark Children’s Hospital for Wales, Cardiff, UK