Quality of life of siblings of adolescents with severe haemophilia (FRATHEMO): An ancillary study to the TRANSHEMO project

Ngoc Anh Thu Nguyen; Pascal Auquier; Any Beltran Anzola; Annie Harroche; Yoann Huguenin; Audrey Hochart; Sandrine Meunier; Birgit Frotscher; Philippe Nguyen; Pascale Schneider; Claire Berger; Aurélien Lebreton; Stéphane Vanderbecken; Emmanuelle De Raucourt; Roseline D'Oiron; Caroline Oudot-Challard; Karine Baumstarck; Mohamed Boucekine; Clémence Tabélé; Natacha Rosso-Delsemme; Thomas Sannié; Nicolas Giraud; Hervé Chambost; Noémie Resseguier; FRATHEMO Study group

doi:10.1111/hae.15023

Quality of life of siblings of adolescents with severe haemophilia (FRATHEMO): An ancillary study to the TRANSHEMO project

Haemophilia. 2024 Jul;30(4):1071-1076. doi: 10.1111/hae.15023. Epub 2024 Apr 29.

Authors

Ngoc Anh Thu Nguyen^{1

2}, Pascal Auquier^{1

2

3}, Any Beltran Anzola^{1

2}, Annie Harroche⁴, Yoann Huguenin⁵, Audrey Hochart⁶, Sandrine Meunier⁷, Birgit Frotscher⁸, Philippe Nguyen⁹, Pascale Schneider¹⁰, Claire Berger¹¹, Aurélien Lebreton¹², Stéphane Vanderbecken¹³, Emmanuelle De Raucourt¹⁴, Roseline D'Oiron^{3

15}, Caroline Oudot-Challard¹⁶, Karine Baumstarck^{1

2

3}, Mohamed Boucekine^{1

2

3}, Clémence Tabélé^{1

2

3}, Natacha Rosso-Delsemme^{17

18}, Thomas Sannié¹⁹, Nicolas Giraud¹⁹, Hervé Chambost^{3

18}, Noémie Resseguier^{1

2}; FRATHEMO Study group

Collaborators

FRATHEMO Study group:
Sophie Bayart²⁰, Annie Borel-Derlon²¹, Amandine Celli²², Pierre Chamouni¹⁰, Ségolène Claeyssens-Donadel¹⁶, Maud Colinart-Thomas⁹, Céline Falaise²³, Piotr Gembara¹², Stéphane Girault²⁴, Benoît Guillet²⁰, Tanguy Leroy²⁵, Raphaël Marlu²⁶, Michèle Martin⁸, Vanessa Milien²⁷, Fabrice Monpoux²⁸, Placide Nyombe¹³, Benoît Polack²⁶, Anne Rafowicz²⁹, Yohann Repesse²¹, Delphine Rivaud¹³, Pierre-Simon Rohrlich²⁸, Marie-Anaïs Roques³⁰, Alexandra Spiegel³¹, Sophie Susen⁶, Marc Trossaërt²², Romain Voltzenlogel³, Bénédicte Wibaut-Pegneaux⁶

Affiliations

¹ CEReSS - Health Services and Quality of Life Research, Research Unit 3279, Aix-Marseille University, Marseille, France.
² Methodological Support Unit for Clinical and Epidemiological Research, University Hospital of Marseille (AP-HM), Marseille, France.
³ FranceCoag Network, Marseille, France.
⁴ University Hospital of Paris (AP-HP), Haemophilia Treatment Centre, Hospital Necker, Paris, France.
⁵ University Hospital of Bordeaux, Haemophilia Treatment Centre, Bordeaux, France.
⁶ University Hospital of Lille, Hematology Transfusion, Lille, France.
⁷ Hospices Civils de Lyon, Haemophilia Treatment Centre and French Reference Centre on Haemophilia, University Hospital, Bron, France.
⁸ University Hospital of Nancy, Haemophilia Treatment Centre, Nancy, France.
⁹ University Hospital of Reims, Haemophilia Treatment Centre, Reims, France.
¹⁰ University Hospital of Rouen, Haemophilia Treatment Centre, Rouen, France.
¹¹ University Hospital of Saint-Etienne, Haemophilia Treatment Centre, Saint-Etienne, France.
¹² University Hospital of Clermont-Ferrand, Haemophilia Treatment Centre, Clermont-Ferrand, France.
¹³ University Hospital of Reunion, Haemophilia Treatment Centre, Reunion Island, France.
¹⁴ Hospital of Versailles, Haemophilia Treatment Centre, Versailles, France.
¹⁵ University Hospital of Paris (AP-HP), Haemophilia Treatment Centre, Hospital Bicêtre, Paris, France.
¹⁶ University Hospital of Toulouse, Haemophilia Treatment Centre, Toulouse, France.
¹⁷ Laboratory of Clinical Psychopathology; language and subjectivity, Research Unit EA 3278, Aix-Marseille University, Aix-en-Provence, France.
¹⁸ University Hospital of Marseille (AP-HM), Haemophilia Treatment Centre, Children Hospital La Timone, Marseille, France.
¹⁹ French Association for People with Haemophilia (AFH), Paris, France.
²⁰ University Hospital of Rennes, Haemophilia Treatment Centre, Rennes, France.
²¹ University Hospital of Caen, Haemophilia Treatment Centre, Caen, France.
²² University Hospital of Nantes, Haemophilia Treatment Centre, Nantes, France.
²³ AP-HM, Haemophilia Treatment Centre, Children Hospital La Timone, Marseille, France.
²⁴ University Hospital of Limoges, Haemophilia Treatment Centre, Limoges, France.
²⁵ Inserm, U1296 Unit, Radiation: Defense, Health and Environment, Lumière Lyon 2 University, Lyon, France.
²⁶ University Hospital of Grenoble, Haemophilia Treatment Centre, Grenoble, France.
²⁷ AP-HM, Department of Paediatric Haematology, Children Hospital La Timone, France / FranceCoag Network, Marseille, France.
²⁸ University Hospital of Nice, Haemophilia Treatment Centre, Nice, France.
²⁹ Hospital of Versailles, Haemophilia Treatment Centre, Versailles, France / AP-HP, Haemophilia Treatment Centre, Hospital Bicêtre, Paris, France.
³⁰ Laboratory of Clinical Psychology, Psychopathology and Psychoanalysis, UR 3278, Aix-Marseille University, Aix-en-Provence, France / AP-HM, Haemophilia Treatment Centre, Children Hospital La Timone, Marseille, France.
³¹ University Hospital of Strasbourg, Pediatric Onco-Haematology Service, Strasbourg, France.

PMID: 38684456
DOI: 10.1111/hae.15023

No abstract available

Publication types

Letter

MeSH terms

Adolescent
Child
Female
Hemophilia A* / psychology
Humans
Male
Quality of Life*
Siblings* / psychology
Surveys and Questionnaires

Publication types

MeSH terms

Grants and funding