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

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 analysed 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.