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Observational Study
. 2023 Sep;29(5):1202-1218.
doi: 10.1111/hae.14841. Epub 2023 Aug 12.

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

Ngoc Anh Thu Nguyen  1   2 , Pascal Auquier  1   2   3 , Any Beltran Anzola  1   2 , Annie Harroche  4 , Sabine Castet  5 , Yoann Huguenin  5 , Sandrine Meunier  6 , Yohann Repesse  7 , Roseline D'Oiron  8 , Antoine Rauch  9 , Dominique Desprez  10 , Alexandra Spiegel  11 , Pierre Chamouni  12 , Pascale Schneider  12 , Karine Baumstarck  1   2   3 , Mohamed Boucekine  1   2   3 , Clémence Tabele  1   2   3 , Marie Viprey  3   13   14 , Tanguy Leroy  15 , Marie-Anaïs Roques  16   17 , Thomas Sannie  18 , Nicolas Giraud  18 , Hervé Chambost  3   17 , Noémie Resseguier  1   2 ; TRANSHEMO Study group
Collaborators, Affiliations
Observational Study

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

Ngoc Anh Thu Nguyen et al. Haemophilia. 2023 Sep.

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.

Keywords: adherence; adolescents; haemophilia; quality of life; transition; young adults.

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References

REFERENCES

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