Accueil Recherches scientifique Publications scientifiques Roques MA et al. : Navigating the Transition From Adolescence to Adulthood Among Young People With Severe Haemophilia: The Qualitative Phase of the TRANSHEMO Project

Publié le 12 novembre 2025

Roques MA et al. : Navigating the Transition From Adolescence to Adulthood Among Young People With Severe Haemophilia: The Qualitative Phase of the TRANSHEMO Project

https://pubmed.ncbi.nlm.nih.gov/40932388/

PMCID: PMC12612361

DOI: 10.1111/hae.70101

Abstract

Haemophilia causes spontaneous or prolonged bleeding due to a deficiency in clotting factor VIII (haemophilia A) or IX (haemophilia B). Although substitutive therapies and regular follow-up can prevent severe haemorrhagic events, adherence to treatment remains a challenge. Transitioning from adolescence to adulthood and from paediatric to adult care is particularly complex for young people with severe haemophilia (PwSH), as it involves gaining autonomy in health management.

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

© 2025 The Author(s). Haemophilia published by John Wiley & Sons Ltd.

Nos autres publications

2024 Nguyen A et al : Quality of life of siblings of adolescents with severe haemophilia (FRATHEMO): An ancillary study to the TRANSHEMO project

PMID: 38684456 DOI: 10.1111/hae.15023 https://pubmed.ncbi.nlm.nih.gov/38684456/

2024 Meunier S et al : Severe haemorrhages leading to a diagnosis of rare bleeding disorder occur at a very young age. A study from the FranceCoag network Haemophilia

https://pubmed.ncbi.nlm.nih.gov/38738973/ PMID: 38738973 DOI: 10.1111/hae.15033 Abstract In the context of severe unexplained haemorrhage (SH), it is usual to seek haematological […]

2023 Nguyen A et al : 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

https://pubmed.ncbi.nlm.nih.gov/37572328/ PMID: 37572328 DOI: 10.1111/hae.14841 Abstract Introduction: It is necessary to gain insights into adherence to healthcare in people with […]

2022 Resseguier N et al : Occupational integration of adults with severe haemophilia (INTHEMO): A study based on the FranceCoag registry

https://pubmed.ncbi.nlm.nih.gov/35858674/ Collaborators, Affiliations PMID: 35858674 DOI: 10.1111/hae.14620 Abstract Introduction: Health of people with severe haemophilia (PwSH) improves thanks to the […]

2021 Saultier P et al: Compliance with Early Long-Term Prophylaxis Guidelines for Severe Hemophilia A

https://pubmed.ncbi.nlm.nih.gov/33676933/ PMID: 33676933 DOI: 10.1016/j.jpeds.2021.02.071 Abstract Objectives: To evaluate the applicability and compliance with guidelines for early initiation of long-term […]

2020 Rugeri L et al : Gynecological and obstetric outcome in the French cohort of women with Factor XIII deficiency

https://pubmed.ncbi.nlm.nih.gov/32360976/ PMID: 32360976 DOI: 10.1016/j.thromres.2020.04.010 Abstract Introduction: Congenital factor XIII deficiency is a very rare bleeding disorder affecting 33 patients […]

2020 Bouttefroy S et al : Congenital factor XIII deficiency: comprehensive overview of the FranceCoag cohort

https://pubmed.ncbi.nlm.nih.gov/31414482/ PMID: 31414482 DOI: 10.1111/bjh.16133 Abstract This FranceCoag network study assessed 33 patients with congenital factor XIII (FXIII) deficiency presenting […]

2020 Row C et al : Abnormal Bleeding Phenotype in Mild Hemophilia B Patients with the p.Ile112Thr Variation on the Gene for Factor IX

https://pubmed.ncbi.nlm.nih.gov/32996663/ PMID: 32996663 DOI: 10.1111/hae.14146

2019 Calvez T et al : Recombinant Factor VIII Products and Inhibitor Development in Previously Untreated Boys With Severe Hemophilia A

https://pubmed.ncbi.nlm.nih.gov/25253771/ PMID: 25253771 DOI: 10.1182/blood-2014-07-586347 Free article Abstract Six recombinant factor VIII (rFVIII) products have been marketed worldwide. In 2013, […]

2019 Volkers A et al : Recombinant factor VIII products and inhibitor development in previously untreated patients with severe haemophilia A: Combined analysis of three studies

https://pubmed.ncbi.nlm.nih.gov/31066174/ PMID: 31066174 DOI: 10.1111/hae.13747 Abstract Introduction: Standard treatment of congenital haemophilia A is based on replacement therapy with coagulation […]

2019 Iorio A et al : Establishing the Prevalence and Prevalence at Birth of Hemophilia in Males: A Meta-analytic Approach Using National Registries

https://pubmed.ncbi.nlm.nih.gov/31499529/ PMID: 31499529 DOI: 10.7326/M19-1208 Abstract Background: The large observed variability in hemophilia prevalence prevents robust estimation of burden of […]

2018 Resseguier N et al : Determinants of Adherence and Consequences of the Transition From Adolescence to Adulthood Among Young People With Severe Haemophilia (TRANSHEMO): Study Protocol for a Multicentric French National Observational Cross-Sectional Study

https://pubmed.ncbi.nlm.nih.gov/30049701/ PMID: 30049701 PMCID: PMC6067371 DOI: 10.1136/bmjopen-2018-022409 Abstract Introduction: Severe haemophilia is a rare disease characterised by spontaneous bleeding from […]

2018 Doncarli A et al : FranceCoag: A 22-year Prospective Follow-Up of the National French Cohort of Patients With Inherited Bleeding Disorders

https://pubmed.ncbi.nlm.nih.gov/30515664/ PMID: 30515664 DOI: 10.1007/s10654-018-0468-7 Abstract FranceCoag is an ongoing open prospective multicentre cohort project aimed at improving epidemiological knowledge […]

2015 Calvez T et al : Response: Confounding by indication is unlikely to explain the higher inhibitor incidence in boys treated with a recombinant FVIII product

https://pubmed.ncbi.nlm.nih.gov/26069335/ PMID: 26069335 DOI: 10.1182/blood-2015-02-622167 Free article No abstract available

2013 Meunier S et al : Use of clinical practice guidelines on long-term prophylaxis in severe hemophilia in France: a retrospective audit

https://pubmed.ncbi.nlm.nih.gov/23333129/ PMID: 23333129 DOI: 10.1016/j.jpeds.2012.11.080 Abstract Objectives: To evaluate the impact of the 2002 guidelines on the current status of […]

2010 Chambost H et al : Epidemiology of Hereditary Bleeding Disorders: Input of FranceCoag Network

https://pubmed.ncbi.nlm.nih.gov/20654808/ PMID: 20654808 DOI: 10.1016/S0929-693X(10)70026-9 No abstract available

2007 Chambost H et al : Implementation of a hepatitis A prevention policy in haemophiliacs: results from the French cohort

https://pubmed.ncbi.nlm.nih.gov/17973847/ PMID: 17973847 DOI: 10.1111/j.1365-2516.2007.01531.x Abstract In the early nineties, the occurrence of hepatitis A outbreaks in some patients with […]

2002 Chambost H et al : What Factors Influence the Age at Diagnosis of Hemophilia? Results of the French Hemophilia Cohort

https://pubmed.ncbi.nlm.nih.gov/12378196/ PMID: 12378196 DOI: 10.1067/mpd.2002.128115 Abstract Objective: The diagnosis of hemophilia was reported as delayed in historic studies. We therefore […]

2002 Gaboulaud V et al : Prevalence of IgG Antibodies to Human Parvovirus B19 in Haemophilia Children Treated With Recombinant Factor (F)VIII Only or With at Least One Plasma-Derived FVIII or FIX Concentrate: Results From the French Haemophilia Cohort

https://pubmed.ncbi.nlm.nih.gov/11841442/ PMID: 11841442 Abstract Human parvovirus B19 (B19) has been transmitted by some brands of virally attenuated plasma-derived factor VIII […]

2001 Calvez T et al : The French Haemophilia Cohort: Rationale and Organization of a Long-Term National Pharmacosurveillance System

https://pubmed.ncbi.nlm.nih.gov/11136385/ PMID: 11136385 DOI: 10.1046/j.1365-2516.2001.00457.x Abstract Medicinal products of biological origin still carry a specific iatrogenic risk, mainly because of […]

Voir toutes les publications