血友病
医学
定性研究
焦点小组
自治
医疗保健
乐观 主义
心理学
儿科
心理治疗师
经济增长
社会学
业务
经济
营销
社会科学
法学
政治学
作者
Marie‐Anaïs Roques,Natacha Rosso‐Delsemme,Amandine Celli,Ngọc Ánh Nguyễn,Martin Postzich,Sabine Castet,Yoann Huguenin,Annie Harroche,Anne Lienhart,Sandrine Meunier,Christine Biron‐Andréani,Florence Rousseau,Roseline d’Oiron,Yohann Repessé,Clémence Tabélé,Any Beltran Anzola,Thomas Sannié,Nicolas Giraud,Pascal Auquier,Hérvè Chambost
摘要
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.
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