Navigating the Transition from Adolescence to Adulthood Among Young People with Severe Haemophilia: The Qualitative Phase of the TRANSHEMO Project

Authors: Roques, M-A; Rosso-Delsemme, N; Celli, A; Nguyen, NA; Postzich, M; Castet, S; Huguenin, Y; Harroche, A; Lienhart, A; Meunier, S; Biron-Andréani, C; Rousseau, F; D’Oiron, R; Repessé, Y; Tabélé, C; Beltran Anzola, A; Sannié, T; Giraud, N; Auquier, P; Chambost, H; Resseguier, N

Affiliations : LPCPP / UR 3278, Laboratory of Clinical Psychology and Psychoanalysis, Aix-Marseille University, Aix-en-Provence, France. Haemophilia Treatment Centre, Children Hospital La Timone, University Hospital of Marseille (AP-HM), Marseille, France. Haemophilia Treatment Centre, University Hospital of Nantes, Nantes, France. Methodological Support Unit for Clinical and Epidemiological Research, University Hospital of Marseille (AP-HM), Marseille, France. Haemophilia Treatment Centre, University Hospital of Bordeaux, Bordeaux, France. Haemophilia Treatment Centre, Hospital Louis Pradel, University Hospital of Lyon (HCL), Bron, France. Haemophilia Treatment Centre, University Hospital of Montpellier, Montpellier, France. Haemophilia Treatment Centre, Hospital Bicêtre, University Hospital of Paris (AP-HP), Paris, France. Haemophilia Treatment Centre, University Hospital of Caen, Caen, France. FranceCoag Network, University Hospital of Marseille (AP-HM), Marseille, France. French Association for people with Haemophilia (AFH), Paris, France.

Publication: Haemophilia. 2025

ABSTRACT: INTRODUCTION: 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. OBJECTIVES: This study aimed to explore factors influencing the success of the transition process in young PwSH, with a focus on adherence to healthcare. METHODS: This qualitative study was part of the mixed-methods TRANSHEMO project. Participants were selected from the quantitative phase of the TRANSHEMO project based on two criteria: adolescents/young adults and adherent/nonadherent to healthcare. Interviews were conducted via video conferencing, transcribed, and thematically analyzed to identify key themes affecting the transition process. RESULTS: Twenty-two interviews were conducted. Four major themes emerged as critical to transition success: (1) Care factors [continuity of care, treatment rituals, and evolving therapies]; (2) Family and social factors [support from family, friends, peers, and overprotection]; (3) Personal factors [understanding haemophilia, risk management, optimism, and coping strategies]; and (4) Autonomy [secondary benefits, independence, proactivity in disease management, and accompaniment by caregivers]. CONCLUSION: Based on the enlightened determinants, supportive strategies and patient education programs should focus on the development of autonomy, personal factors such as acquisition and application of health literacy in haemophilia care, and family factors such as support from family.