Development and validation of the Child Hemophilia Treatment Experience Measure: A new observer-reported outcome measure

The Child Hemophilia Treatment Experience Measure (Child Hemo-TEM) was developed to capture the treatment burden experience of children with haemophilia (CwH). Describe the development of this novel haemophilia-specific measure. Interviews were conducted with clinical experts, CwH and CwH's car...

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Bibliographic Details
Published in:Haemophilia : the official journal of the World Federation of Hemophilia 2024-10
Main Authors: Brod, Meryl, Bushnell, Donald M, Busk, Anne Kirstine, Neergaard, Jesper Skov
Format: Article
Language:English
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Summary:The Child Hemophilia Treatment Experience Measure (Child Hemo-TEM) was developed to capture the treatment burden experience of children with haemophilia (CwH). Describe the development of this novel haemophilia-specific measure. Interviews were conducted with clinical experts, CwH and CwH's caregivers. Interviews were analysed according to adapted grounded theory principles. Based on the analysis, a preliminary measure was developed and debriefed. Psychometric analyses were performed according to an a priori analysis plan using data collected in a cross-sectional web survey and a final measure was generated. Interviews with four clinical experts, 25 CwH ages 8 to
ISSN:1351-8216
1365-2516
1365-2516
DOI:10.1111/hae.15102