Title :

Determinants of adherence and consequences of the transition from adolescence to adulthood among young people with severe haemophilia (TRANSHEMO): A multicentric French national observational cross‐sectional study based on the FranceCoag registry

Author(s) :

Nguyen, Ngoc Anh Thu [Auteur]
Auquier, Pascal [Auteur]
Beltran Anzola, Any [Auteur]
Harroche, Annie [Auteur]
Castet, Sabine [Auteur]
Huguenin, Yoann [Auteur]
Meunier, Sandrine [Auteur]
Repesse, Yohann [Auteur]
d'Oiron, Roseline [Auteur]
Rauch, Antoine [Auteur]
Récepteurs Nucléaires, Maladies Métaboliques et Cardiovasculaires - U 1011 [RNMCD]
Desprez, Dominique [Auteur]
Spiegel, Alexandra [Auteur]
Chamouni, Pierre [Auteur]
Schneider, Pascale [Auteur]
Baumstarck, Karine [Auteur]
Boucekine, Mohamed [Auteur]
Tabele, Clémence [Auteur]
Viprey, Marie [Auteur]
Research on Healthcare Performance [RESHAPE - Inserm U1290 - UCBL1]
Hospices Civils de Lyon [HCL]
Leroy, Tanguy [Auteur]
Roques, Marie‐anaïs [Auteur]
Sannie, Thomas [Auteur]
Giraud, Nicolas [Auteur]
Chambost, Hervé [Auteur]
Resseguier, Noémie [Auteur]
Centre d'études et de recherche sur les services de santé et la qualité de vie [CEReSS]

Journal title :

Haemophilia

Pages :

1202-1218

Publisher :

Wiley

Publication date :

2023-08-12

ISSN :

1351-8216

English keyword(s) :

adherence adolescents haemophilia quality of life transition young adults
adherence
adolescents
haemophilia
quality of life
transition
young adults

HAL domain(s) :

Sciences du Vivant [q-bio]

English abstract : [en]

Abstract Introduction It is necessary to gain insights into adherence to healthcare in people with severe haemophilia (PwSH), especially during the transition from paediatric to adult care, which is an important phase in ...
Show more >Abstract Introduction It is necessary to gain insights into adherence to healthcare in people with severe haemophilia (PwSH), especially during the transition from paediatric to adult care, which is an important phase in lives of young people with childhood chronic disease. This adherence can be considered as a marker of successful transition. Objectives The main objective of the quantitative phase of the TRANSHEMO project was to compare the adherence to healthcare between adolescents and young adults (YAs) with severe haemophilia. The secondary objective was to identify the determinants (facilitators and barriers) of this adherence and associations between these determinants. Methods A multicentre, observational, cross‐sectional study was conducted in 2017–2019 on PwSH aged between 14 and 17 years (adolescents) or between 20 and 29 years (YAs), included in the FranceCoag registry and having completed the questionnaires. The adherence to healthcare (treatment regimens and clinical follow‐up) was compared between adolescents and YAs using the chi‐squared test. The determinants of this adherence were analysed by structural equation modelling. Results There were 277 participants, 107 adolescents, and 170 YAs. The rate of adolescents adhering to healthcare was 82.2%, while the rate of YAs was 61.2% ( p < .001). The barriers to the adherence to healthcare were being YA, having repeated at least one school grade and presenting mental health concerns. Conclusion Adolescents had better adherence to healthcare than YAs. According to the determinants enlightened in this project, targeted supportive strategies and adapted therapeutic education programs can be developed for young PwSH to facilitate their adherence to healthcare.Show less >

Language :

Anglais

Peer reviewed article :

Oui

Audience :

Internationale

Popular science :

Non

Collections :

• Récepteurs nucléaires, Maladies Cardiovasculaires et Diabète (RNMCD) - U1011

Source :

Harvested from HAL