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- Title
Quality of life of siblings of adolescents with severe haemophilia (FRATHEMO): An ancillary study to the TRANSHEMO project.
- Authors
Nguyen, Ngoc Anh Thu; Auquier, Pascal; Beltran Anzola, Any; Harroche, Annie; Huguenin, Yoann; Hochart, Audrey; Meunier, Sandrine; Frotscher, Birgit; Nguyen, Philippe; Schneider, Pascale; Berger, Claire; Lebreton, Aurélien; Vanderbecken, Stéphane; De Raucourt, Emmanuelle; D'Oiron, Roseline; Oudot‐Challard, Caroline; Baumstarck, Karine; Boucekine, Mohamed; Tabélé, Clémence; Rosso‐Delsemme, Natacha
- Abstract
This article discusses a study conducted to assess the quality of life (QoL) of siblings of adolescents with severe haemophilia. The study found that the QoL of these siblings was not significantly different from that of the affected adolescents, and it was actually higher than that of the age- and sex-matched French general population. The study also identified several determinants of QoL, including age, gender, anxiety symptoms, coping strategies, prosocial behavior, and emotional intelligence. The findings suggest that siblings of individuals with haemophilia generally have good QoL, but there is a need to address potential psychological distress and behavioral problems. The study was conducted with the participation of various medical professionals, researchers, and representatives from the French Association for People with Hemophilia. The data used in the study was provided by the FranceCoag registry. The study was funded by grants from Bayer Consumer Care AG and the University Hospital of Marseille. The authors declare no conflicts of interest. The data from the study is not publicly available due to privacy and ethical restrictions. The study was approved by the Ethical Research Committees and conducted in accordance with applicable privacy requirements and ethical principles.
- Subjects
QUALITY of life; HEMOPHILIA; SIBLINGS; TRANSITION to adulthood; TEENAGERS
- Publication
Haemophilia, 2024, Vol 30, Issue 4, p1071
- ISSN
1351-8216
- Publication type
Article
- DOI
10.1111/hae.15023