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: | , , , , , , , , , , , , , , |
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| Format: | Article |
| Language: | English |
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Sciendo
2024-09-01
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| Series: | The Journal of Haemophilia Practice |
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| Online Access: | https://doi.org/10.2478/jhp-2024-0014 |
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| _version_ | 1832570289472405504 |
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| author | 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 |
| author_facet | 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 |
| author_sort | Bladen Melanie |
| collection | DOAJ |
| description | 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. |
| format | Article |
| id | doaj-art-2187d05f073840dc9d9acfcd1186f058 |
| institution | Kabale University |
| issn | 2055-3390 |
| language | English |
| publishDate | 2024-09-01 |
| publisher | Sciendo |
| record_format | Article |
| series | The Journal of Haemophilia Practice |
| spelling | doaj-art-2187d05f073840dc9d9acfcd1186f0582025-02-02T15:48:30ZengSciendoThe Journal of Haemophilia Practice2055-33902024-09-0111110812210.2478/jhp-2024-0014Development of a patient-reported outcomes tool to monitor changes in joint health and wellbeing for young people with haemophilia BBladen Melanie0McDonagh Janet1McLaughlin Paul2Gooding Richard3Holder Kerry-Ann4Thind Sharon5Klooster Brittany6Shields Alan7Turner-Bowker Diane M.8Chatterton Kaitlin9Leso Allison10Volpi Connor11Sivasubramaniyam Sujan12Abulizi Jiawula13Khan Nisa14Great Ormond Street Hospital for Children NHS Foundation Trust, London, UKManchester Academic Health Science Centre, University of Manchester, Manchester, UK; National Institute for Health Research Biomedical Research Centre, Manchester University Hospital NHS Trust, Manchester, UKKatharine Dornandy Haemophilia Centre and Thrombosis Unit, Royal Free London NHS Foundation Trust, London, UKHaemophilia Comprehensive Care Centre, Belfast Health and Social Care Trust, Belfast City Hospital, Belfast, UKChild Health Psychology, Inherited Bleeding Disorders and Hereditary Anaemias, Noah’s Ark Children’s Hospital for Wales, Cardiff, UKHaemophilia Comprehensive Care Centre, Alder Hey Children's Hospital, Liverpool, UKAdelphi Values Patient-Centered Outcomes, Boston, MA, USAdelphi Values Patient-Centered Outcomes, Boston, MA, USAdelphi Values Patient-Centered Outcomes, Boston, MA, USUltragenyx Pharmaceutical, Novato, CA, USAdelphi Values Patient-Centered Outcomes, Boston, MA, USAdelphi Values Patient-Centered Outcomes, Boston, MA, USCSL Behring, London, UKCSL Behring, London, UKCSL Behring, London, UKEarly 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.https://doi.org/10.2478/jhp-2024-0014haemophiliajoint bleedsself-monitoringpatient-reported outcomesquality of life |
| spellingShingle | 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 Development of a patient-reported outcomes tool to monitor changes in joint health and wellbeing for young people with haemophilia B The Journal of Haemophilia Practice haemophilia joint bleeds self-monitoring patient-reported outcomes quality of life |
| title | Development of a patient-reported outcomes tool to monitor changes in joint health and wellbeing for young people with haemophilia B |
| title_full | Development of a patient-reported outcomes tool to monitor changes in joint health and wellbeing for young people with haemophilia B |
| title_fullStr | Development of a patient-reported outcomes tool to monitor changes in joint health and wellbeing for young people with haemophilia B |
| title_full_unstemmed | Development of a patient-reported outcomes tool to monitor changes in joint health and wellbeing for young people with haemophilia B |
| title_short | Development of a patient-reported outcomes tool to monitor changes in joint health and wellbeing for young people with haemophilia B |
| title_sort | development of a patient reported outcomes tool to monitor changes in joint health and wellbeing for young people with haemophilia b |
| topic | haemophilia joint bleeds self-monitoring patient-reported outcomes quality of life |
| url | https://doi.org/10.2478/jhp-2024-0014 |
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