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

TL;DR

This study explores how young people with severe haemophilia navigate transitioning to adulthood, identifying key factors that support successful healthcare adherence and autonomy.

Contribution

The study identifies four critical themes influencing successful transition in young people with severe haemophilia through qualitative analysis.

Findings

Four major themes emerged: care factors, family and social factors, personal factors, and autonomy.

Supportive strategies should focus on developing autonomy and health literacy in haemophilia care.

Family support and understanding of haemophilia are crucial for successful transition.

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.

This study aimed to explore factors influencing the success of the transition process in young PwSH, with a focus on adherence to healthcare.

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.

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].

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.

Tables

TABLE 1. Characteristics of adolescents and young adults.

	Adolescents (n = 10)		Young adults (n = 12)
	Adherent people (n = 7) n/mean (%/SD)	Non‐adherent people (n = 3) n/mean (%/SD)	Adherent people (n = 6) n/mean (%/SD)	Non‐adherent people (n = 6) n/mean (%/SD)
Sociodemographic characteristics
Age (years)	14.9 (1.1)	15.0 (1.0)	25.0 (1.8)	22.3 (2.1)
Sex
Male	7 (100)	3 (100)	6 (100)	6 (100)
Female	0	0	0	0
Highest level of education attained
Junior school or vocational qualification	3 (42.9)	1 (33.3)	0	0
High school	4 (57.1)	2 (66.7)	1 (20.0)	3 (60.0)
Higher education	0	0	4 (80.0)	2 (40.0)
Not available	0	0	1	1
Academic difficulty (at least one grade repetition) (yes)	0	0	3 (50.0)	2 (33.3)
Socioeconomic status of the family
Low or medium	2 (28.6)	3 (100)	4 (66.7)	3 (50.0)
High	5 (71.4)	0	2 (33.3)	3 (50.0)
Member of AFH (yes)	4 (57.1)	0	2 (33.3)	2 (33.3)
Clinical characteristics
Type of haemophilia
Haemophilia A	5 (71.4)	3 (100)	5 (83.3)	4 (66.7)
Haemophilia B	2 (28.6)	0	1 (16.7)	2 (33.3)
At least one comorbidity/complication (yes)	0	0	1 (16.7)	2 (33.3)
HIV infection (yes)	0	0	0	0
HBV infection (yes)	0	0	1 (16.7)	0
HCV infection (yes)	0	0	0	0
History of intracranial haemorrhage (yes)	0	0	0	0
History of major orthopaedic interventions (yes)	0	0	0	0
Current treatment regimen
On‐demand treatment	0	0	3 (50)	3 (50)
Prophylactic treatment	7 (100)	3 (100)	3 (50)	3 (50)
Psycho‐behavioural factors
Family functioning (score of FAD)	1.8 (0.6)	2.1 (0.7)	1.8 (0.3)	1.4 (0.6)
Participation in therapeutic education activities (yes)	5 (50)	0	2 (33.3)	3 (50.0)
Quality of life
Physical health (PCS)	51.9 (9.8)	50.2 (3.8)	44.6 (14.1)	50.6 (11.8)
Mental health (MCS)	49.6 (12.0)	49.6 (12.0)	49.9 (5.9)	46.2 (12.7)
Haemophilia‐related quality of life (Haemo‐QoL)	21.4 (19.4)	24.0 (14.1)	41.7 (27.3)	30.7 (30.4)
Coping strategies (scores of Brief COPE)
Social support	3.7 (1.0)	3.8 (1.3)	4.6 (0.6)	4.2 (1.5)
Problem solving	5.6 (1.5)	4.7 (0.8)	5.6 (1.1)	6.2 (1.2)
Avoidance	3.3 (0.7)	3.5 (1.0)	3.4 (0.4)	3.6 (0.5)
Positive thinking	5.4 (1.3)	4.7 (1.5)	5.3 (1.0)	5.6 (1.2)
Autonomy (scores of Noom)
Attitudinal autonomy	18.9 (2.3)	20.0 (3.6)	16.8 (4.4)	17.8 (7.0)
Emotional autonomy	18.4 (3.2)	19.0 (1.0)	16.2 (2.7)	18.7 (3.9)
Functional autonomy	19.7 (2.7)	17.0 (2.6)	18.8 (4.6)	16.3 (4.7)
Time perspective (scores of ZTPI)
Past negative	2.2 (0.8)	2.4 (1.1)	3.0 (0.4)	2.7 (1.1)
Future	3.3 (0.5)	3.3 (0.3)	3.7 (0.3)	3.7 (0.4)
Organizational (HTC‐related) factors
Paediatrician in the medical team of the HTC (yes)	7 (100)	3 (100)	6 (100)	4 (66.7)
Type of healthcare transition in the HTC
Same medical team for adolescents and adults	6 (85.7)	1 (33.3)	4 (66.7)	5 (83.3)
Two different medical teams (paediatric/adult)	1 (14.3)	2 (66.7)	2 (33.3)	1 (16.7)
Set‐up of therapeutic education activities about transition by the HTC (yes)	0	0	0	2 (33.3)

TABLE 2. Thematic analysis.

Themes	Subthemes	Verbatim	Adherent Adults n = 6	Adherent Adolescents n = 7	Non‐adherent Adults n = 6	Non‐adherent Adolescents n = 3
Care factors	Follow‐up by the same medical team	“I go there once a year for a routine check‐up. Since I started to be taken care of in this HTC, there were two or three doctors, but I haven't really felt the change because the doctors are very precise. They read my medical file as it's in the same HTC. They always knew my medical history and the fact that they are specialized in haematology and haemophilia, it gives confidence. I know that I can ask my questions to a specialist.” (Adh‐Adu 4)	4	7	5	3
	Ritualization of treatment	"Right now, I organize my injection on a fixed day, every Thursday morning and every Sunday night. I know that I have to do it at that time, so I never forget. It's like brushing my teeth.” (Adh‐Ado 3)	2	4	0	0
	Evolution of treatments and comfort care	“Now, with my new treatment, I don't have the same concern. My life changed radically; I couldn't have dreamed better. Yesterday, the doctors told me that I could increase the doses, so I only have one injection every 15 days. It gets better and better. I feel freer.” (Adh‐Ado 2)	3	5	2	0
Family and social factors	Support and protection from parents in childhood	“From the beginning, my parents have been invested in my care and in my treatments. We used to go to the hospital often and they would drive back and forth every time for my appointments. Having them around helped a lot. My sister has also been present for me all along.” (Adh‐Ado 2)	6	7	3	3
	Support and caring from friends	“I have very good friends, and I know that… I mean we have never really talked about it, but I know that if I don't feel good, they call me and we can discuss. They are supportive.” (Adh‐Ado 1)	6	5	2	3
	Identification with other people with haemophilia	“It helped me to meet other people with haemophilia…and I also think that it helped my parents.” (Adh‐Ado 6)	4	6	4	3
	Concern and overprotection from relatives	“My parents were very protective… probably too much. I would have loved for them to give me more freedom and space, but today I understand that I was lucky. When you're young, you want your independence. You don't want to be reminded about the disease… But now I understand that they did it to protect me.” (Adh‐Adu 6) “Well… now they are less protective because I'm older but when I was younger it was complicated for me. My mom was very protective, putting a shell around me… but at the same time she took care of everything, so I had less to think about. She still takes care of a lot of things today.” (N‐Adh‐Ado 1)	4	3	2	2
Personal and personality factors	Carefulness and farsightedness	“I've never taken too many risks; I've always been careful. Early on I realized that I need to be mature, and I can have fun, but I need to be careful. You need to strike a balance, because there is no point in taking risks and be damaged at the end.” (Adh‐Adu 1)	5	5	3	3
	Good knowledge of haemophilia, one's own body and limitations	“I've always done lots of activities. I've never felt limited. Of course, I don't do rugby, but it's alright. Rowing and sailing are good. You can do it with haemophilia.” (Adh‐Ado 6)	3	6	3	3
	Optimism	“Today, I don't feel bothered because I think it's already good that we have a treatment. For some diseases, people don't have treatment. Plus, they evolve in a good way, so I really feel optimistic.” (Adh‐Ado 2)	6	7	4	3
	Minimization and distancing of the disease	“I've never wanted to be autonomous; I've always wanted my mom to keep on taking care of me. I feel it's another barrier between me and the disease.” (N‐Adh‐Adu 2)	2	0	6	2
Autonomy	Secondary benefits of the disease	“I like that my mom is still involved in my care. I don't have to bear the burden all alone, and then I get to have special attention as well.” (N‐Adh‐Adu 2)	2	2	4	3
	Autonomy in the disease concomitant with independence in life	“I became autonomous when I left my parents’ house to go study in another city. I already know how to do my injection, but leaving my family made me fully independent.” (Adh‐Adu 2)	4	4	4	3
	Autonomy associated with a desire to be proactive in life and with acceptance of the illness	“My transition toward autonomy is pretty easy because it's way better and handier to be independent in the treatment. More generally in life, you can be freer; you can make your own choices, live alone, go traveling.” (Adh‐Ado 2)	5	6	3	3
	Accompaniment toward autonomy by the HTC	“I used to get on well with my nurse. When I was in the hospital, she asked me if I wanted to learn how to inject myself. My nurse gave me a fake plastic arm to train, and then I tried on her arm and finally I tried on mine, and it worked. It was good because then I could do it myself and go on vacations with friends without care about who would do the injections.” (Adh‐Adu 6)	6	5	1	3

Full text

Introduction

1

Haemophilia is a rare genetic disorder characterized by spontaneous or prolonged bleeding due to a deficiency or absence of clotting factor VIII (haemophilia A) or IX (haemophilia B) and transmitted via X‐linked recessive inheritance, thus affecting mainly males [1]. People with severe haemophilia (PwSH) may present serious haemorrhagic events (e.g., intracranial haemorrhage, haemarthrosis). It is possible to avoid these events by haemophilia care, such as substitutive therapies and lifelong regular clinical follow‐up, whose major issue is adherence. Severe haemophilia, like other severe chronic conditions, can significantly impact patients' lives from birth to adulthood, giving rise to specific concerns at different stages of life [2]. Patients’ developmental process requires them to progress from being entirely dependent on caregivers to becoming independent and gaining autonomy in adulthood.

The process of transitioning to adult life can be complex for young people with a chronic disease because it involves navigating the transition between adolescence and adulthood, and transferring from a paediatric to an adult care system [3, 4]. A successful transition requires the transfer of responsibility for managing their health from parents to children, mobilizing their experiential knowledge, acquiring new knowledge and skills necessary for autonomy, and accepting their new role as an adult [5, 6, 7]. A difficult transition can lead to a significant decrease in adherence as well as a deterioration in the patient's overall health and quality of life (QoL) [8, 9].

According to the theoretical Social‐ecological Model of Adolescents and Young Adults' Readiness for Transition (SMART) [10], several factors affect the success of the transition process for young people with chronic disease [11, 12, 13, 14, 15, 16], such as factors associated with young people themselves, with their parents, and with healthcare providers [10, 17, 18, 19, 20, 21, 22].

In the specific context of haemophilia, qualitative research has examined the transition of young people [23, 24, 25, 26, 27]. However, no such studies have been conducted in the framework of a mixed methods design to address the issue of transition in young PwSH in a global way.

The general objective of the mixed methods TRANSHEMO project [5, 28] was to explore the transition to adulthood of young PwSH in a global way. The present study, which is the qualitative phase of the project, aimed to explore participants’ views in more depth (patients were selected from the quantitative phase) to explain and refine the understanding of the quantitative phase.

Materials and Methods

2

Population

2.1

Participants included in the quantitative research met the following inclusion criteria: adolescents aged 14–17 years and young adults (YAs) aged 20–29 years, PwSH A or B, included in the FranceCoag registry, and followed in one of the 29 participating haemophilia treatment centres (HTCs).

Participants included in the qualitative phase were selected from the quantitative phase according to four types defined by two characteristics: age (adolescents vs. YAs) and adherence to healthcare (adherent vs. nonadherent), this adherence being considered as a marker of the success of the transition to adulthood [5].

Methods

2.2

A researcher conducted the interviews between December 2020 and June 2021 via the Zoom online conferencing platform due to the COVID‐19 pandemic. The interviews lasted 45 min to 1 h and followed a predetermined open‐ended interview guide that allowed participants to explore specific responses. The guide encouraged participants to discuss their understanding of the transition to adulthood, their expectations for their personal and professional lives, their plans for managing their health, their fears about entering adulthood, their difficulties in acquiring autonomy, and the barriers and facilitators they encountered during their transition process.

Sample Size

2.3

The number of participants was determined using a data saturation method.

Ethics

2.4

The study was approved by the French Ethical Research Committee (reference number 16.065), by the French National Agency for the Safety of Medicines and Health Products (reference number ID RCB: 2016‐A01034‐47), and by the French Data Protection Authority (reference number DR‐2018‐060), whose principles are in line with those of the General Data Protection Regulation. The protocol was registered at ClinicalTrials.gov (NCT02866526). To participate in the quantitative phase of this study, written consent was obtained from the YAs and the parents (or legal representatives) of the adolescents. Additional consent for voice recording was obtained from participants who agreed to participate in the qualitative phase of the study.

Analysis

2.5

The interviews were analysed using thematic analysis. A realist approach was adopted, reporting the experiences, meanings, and realities of the participants. Each theme mentioned at least once by the participants was considered, because the number of occurrences is not necessarily a reliable indicator of a theme's importance [29]. The steps outlined by Braun and Clarke [29] were followed, including familiarizing the researchers with the data, generating initial codes, searching for themes, reviewing themes, defining and naming themes, and producing the final report.

Results

3

Participants

3.1

We recruited 22 French‐speaking participants from the quantitative phase of the TRANSHEMO project [5, 28]. Their main characteristics are presented in Table 1.

Results of the Research

3.2

The results of the thematic analysis are presented in Table 2. Our analysis revealed four major themes that played a crucial role in facilitating or limiting the success of the transition: (1) care factors, (2) family and social factors, (3) personal and personality factors, and (4) autonomy.

Care Factors

3.2.1

Being followed by the same medical team appeared to be associated with a greater sense of confidence and support for all four groups of participants. According to most participants, this factor appeared to have a positive impact on the transition from adolescence to adulthood.

Having routinized habits such as performing injections at the same time of day or following a set sequence, which participants described as treatment rituals, appeared to facilitate the transition for adherent participants, because it helped them remember and manage their chronic disease better. One participant even compared it to a daily hygiene routine, saying: ‘It's like brushing my teeth’ (Adh‐Ado 3, Table 2). Participants who did not have rituals seemed to be less involved in their care process and, as a result, less adherent to treatments.

Participants perceived that the therapeutic innovation was associated with a higher QoL and more freedom in daily life. For most adherent participants, this factor appeared to facilitate the transition, as they maintained hope and benefited from the latest treatments.

Family and Social Factors

3.2.2

The participants identified the overall support of their family, including involvement in care, as a helpful factor in the transition process, specifically in the normalization of their illness.

The participants also mentioned the positive impact of social support, such as friends with a good understanding of their condition.

Receiving social support from other people with the same condition appeared to be an important factor in facilitating the transition to adulthood. This support allowed the participants to find role models and work toward accepting their condition, whether this support came from family members, members of the French Association for people with Haemophilia, expert patients, or people from the same HTC.

The seriousness of the disease could lead to overprotection and overcautiousness from family members, which had both positive and negative effects on the transition process. Adherent participants often attributed their parents' behaviour to their precarious medical condition. For nonadherent participants, the overprotection and limitations imposed by their families could lead to feelings of helplessness and little involvement in their care.

Personal and Personality Factors

3.2.3

** Being careful about risks and farsighted about the disease ** seemed to be important personality factors that facilitated the transition process. These factors seemed to be linked to respect for medical recommendations and advice.

Having a good understanding of haemophilia, one's own body and limitations seemed to be an important factor facilitating the transition process. This factor was associated with the ability to make their own choices in life (such as school, profession and hobbies), while considering their health condition and knowing what they could and could not do.

The ability to maintain optimism about the consequences of haemophilia seemed to be an important factor linked to a successful transition. This factor was also associated with the participants' ability to remain optimistic about the future, particularly with regard to medical progress and the evolution of treatments over time, as well as their perception of themselves as they aged.

The ability to use coping strategies that involved minimizing or distancing oneself from the condition appeared to be important among nonadherent participants. Specifically, they seemed not to fully recognize the seriousness of the illness and took more risks to test their limits. Most participants in this group also showed less interest in discussing haemophilia and expressed a sense of indifference and passivity toward their care management.

Autonomy

3.2.4

** Having secondary benefits from the disease ** appeared to be a limiting factor in the transition process. This factor was mostly cited by nonadherent participants. Some of them felt comfortable not managing their treatment autonomously, which reduced their mental load.

Being independent in life and leaving the parental home seemed to be facilitators in the transition process. Autonomy in disease management is usually concomitant with autonomy in life.

Having the desire to be proactive in life facilitated the transition to adulthood and fostered the process of achieving autonomy. Being proactive appeared to be linked with acceptance of the disease. Adherent participants wanted to make deliberate choices about their condition and wanted to feel free in managing their treatment.

Being accompanied toward autonomy by the HTC appeared to be an important factor that facilitated the transition process. Increased autonomy seemed to be facilitated by the support and availability of the HTC's medical and paramedical team starting in early adolescence and continuing until the achievement of full autonomy. Several participants described how nurses or other healthcare professionals played a key role in gradually helping them become independent in managing their treatment. This included learning to self‐inject through hands‐on practice and receiving encouragement and reassurance. This supportive process enabled participants to gain confidence and manage their condition more freely.

Discussion

4

The period of transition from adolescence to adulthood is a critical time in terms of healthcare adherence for people with chronic diseases. This study compared the experiences of adolescents and YAs with severe haemophilia by contrasting their narratives according to their adherent/non‐adherent status. While adherence was used as a criterion to define participant profiles, our analysis aimed to investigate a broader, multidimensional understanding of transition success, encompassing psychosocial and structural dimensions in addition to adherence. Adolescents shared their perspectives and preparations for the transition, while YAs described their own experiences. Several factors, grouped across four dimensions, either hindered or facilitated transition success and adherence.

Factors Limiting Adherence to Healthcare and Transition Success

4.1

Care Factors

4.1.1

Perceiving treatments as a constraint was a barrier to the successful transition. Patients who express difficulty in accepting haemophilia see their treatment as a constant reminder of their illness [30, 31]. Thus, these patients may consciously choose to skip their treatment. Furthermore, a lack of routine or ritualization limited adherence to healthcare. Nonadherent participants had difficulties in organizing their treatment injections, which resulted in forgetfulness and delays. This finding was supported by a previous study that highlighted the link between self‐management skills (planning injections, management of the illness, etc.) and adherence to healthcare as a lens rather than a sufficient measure of transition success [32].

Family and Social Factors and Autonomy

4.1.2

Overprotection and overcautiousness from parents could limit transition success. For nonadherent participants, it appeared to be related to their difficulty in being involved in their own care. In addition, nonadherent participants cited the secondary benefits they received, such as special attention from their relatives and friends and comfort from not being autonomous in their care. This situation creates a vicious circle in which young PwSH do not take an active role in their healthcare due to the overinvolvement of their parents, who in turn become even more involved because of their child's lack of involvement. Previous research supports these findings; an educational style marked by overprotection was shown to be associated with lower adherence among children with chronic illnesses [30], highlighting the importance of finding the right balance between prevention and overprotection.

Personal and Personality Factors

4.1.3

Minimizing the impact of the illness and using distancing strategies limited transition success. Some patients may be uninformed or uninterested in their illness and its potential consequences, leading them to ignore their health condition and make risky choices [30]. Others may struggle to emotionally accept their illness, which may lead to passivity in managing their own care and a lack of adherence to healthcare [33].

Factors Facilitating Adherence to Healthcare and Transition Success

4.2

Care Factors

4.2.1

Being followed by the same medical team throughout the entire care pathway facilitated transition success because it increased the sense of confidence and support. Some studies have shown a link between being followed by the same medical team, having a stronger relationship with healthcare providers and better adherence to healthcare [30, 34]. In situations where clinical follow‐up could not be continued with the same medical team, participants mentioned the importance of communication between the two medical teams because transfers need to be prepared in advance for a bond of trust with new healthcare providers.

Having a ritual and maintaining a regular schedule facilitated transition success. Adherent participants described this routine as involving practical skills in medication preparation and infusion. Having a ritual could reduce stress and the risk of forgetting to take medication [34]. Previous research linked the ability to establish a treatment routine with improved forecasting of treatment needs, since people become more proactive and fully integrate their care into their daily lives [4]. The perception of treatment benefits facilitated adherence to healthcare [30]. Adherent participants expressed optimism about the future and the greater freedom that improved treatments allowed.

Family and Social Factors

4.2.2

Receiving parental support (including overprotection and overcautiousness), support from friends, and support from other PwSH through the HTC or associations facilitated transition success. Adherent participants reported their parents' involvement in managing their treatment and care, as well as normalizing and reassuring them about their condition. This support enabled young PwSH to become more autonomous as they grew up and helped them develop the capacity to manage their health condition, self‐care, and self‐efficacy. Receiving social support from friends during the transition helped individuals feel “normal” and created a sense of belonging despite their condition. Peer support allowed access to other experiences and helped individuals feel “normal”, providing hope for the future. This support could take different forms, including participating in patient education programs contributed by expert patients [35], sharing practical advice [33], feelings, and personal experiences, leading to the feeling of being understood [34]. While peer support was largely viewed positively, some young PwSH preferred to distance themselves from their diagnosis, as part of a strategy to minimize the psychological burden of illness. This variation in responses highlights the need for personalized approaches to transition support, as not all individuals wish to identify with a patient group or revisit their illness outside of clinical care.

Personal and Personality Factors

4.2.3

Having a good understanding of haemophilia, one's own body, and its limitations facilitated adherence and transition success. This involves understanding why bleeding occurs, when and how to take care of it, and who to turn to for support [36]. It allows young PwSH to better understand the importance of treatment, which could lead to appropriate health decision‐making. Furthermore, most adherent participants paid attention to their bodily sensations and symptoms, which enabled them to better manage their health [33]. It also made them more careful about risks and about integrating them into their daily lives and life choices. Acceptance of the disease led PwSH to adapt their life goals to their medical condition and make appropriate choices, helping to enhance resilience and maintain optimism.

Autonomy

4.2.4

The progressive acquisition of autonomy, which allows young PwSH to become more proactive in managing their disease, facilitates transition success. People who gradually accept their chronic illness and learn to manage it over time develop their personal image in the process [37].

Being accompanied by the HTC toward the autonomy of one's own care facilitated transition success. Research has highlighted the positive role of medical teams in achieving autonomy, encouraging involvement in medical appointments [38], providing positive feedback, and discussing difficult times from the beginning of adolescence because the self‐management process is gradual [20].

Limitations and Strengths

4.3

First, adherence to healthcare as a criterion for a successful transition is still debatable. Nevertheless, adherence to healthcare is in the top five of healthcare transition outcomes validated by an interdisciplinary group of medical and psychosocial professionals [39]. Moreover, adherence to healthcare, which has often been assessed only by adherence to prophylaxis, was assessed more completely in our study by including seven subcriteria of adherence. In addition, transition success may encompass aspects such as QoL, autonomy, and self‐efficacy. The quantitative phase of our project [28] analysed the associations between psychosocial aspects (autonomy, mental health concerns, haemophilia‐specific QoL, social support) and adherence to healthcare, while the findings of the qualitative phase on lived experience emphasize the need for deeper studying perspectives on therapeutic innovations, relational or psychological vulnerabilities, preventive and reactive behaviours in acute bleed management of young PwSH to enhance their adherence to healthcare and QoL.

Second, some major therapeutic innovations, such as Emicizumab and gene therapy, have been recently developed and are now widely available, which was not the case at the time of the TRANSHEMO project. Adherence to healthcare for young PwSH may have evolved thanks to these therapeutic advances. It will be necessary to reassess this adherence in future studies.

Third, all interviews were conducted in French with participants living in France. This could limit the generalizability of the findings to other sociocultural contexts. While the identified themes, such as the importance of family dynamics, treatment ritualization, or autonomy, may resonate widely, cultural and organizational differences may affect their relevance. The decision to include only French‐speaking people was pragmatic, aiming to ensure the depth and nuance of qualitative data. However, this may have excluded migrants or non‐native French‐speaking individuals, who could face unique challenges related to cultural and linguistic integration. Future cross‐cultural studies could explore how social and cultural norms shape the transition process in PwSH.

Lastly, interviews were conducted remotely via Zoom during the COVID‐19 pandemic. Social isolation may have influenced participants’ perceptions and narratives. However, we did not observe signs of discomfort or constraint. On the contrary, many participants shared emotionally rich and personal stories, suggesting that the remote format did not hinder openness. Nonetheless, we acknowledge this potential limitation.

Despite these limitations, the study offers a rich and nuanced understanding of the transition process within a specific healthcare system and time frame.

Clinical Perspectives

4.4

The findings of this study can support practical clinical perspectives in both paediatric and adult care. To better support young PwSH during their transition to adulthood, we propose three complementary strategies.

First, healthcare providers need to provide intensified care support at transition points and take an active part in relaying information from paediatric to adult care centres and from one healthcare provider to another, when patients change doctors or hospital services. Improving communication between children's and adults’ hospitals and between healthcare providers can also help young PwSH and their families become more aware of the transition of care and ensure the continuity of care. Adults’ hospitals may offer a welcoming and competent environment, supported by stable professionals and trust‐building strategies. Early preparation and collaborative transfer planning can ease patient adaptation. In this context, paediatric teams should implement structured transition programs focusing on self‐injection and fostering broader healthcare autonomy, including appointment scheduling and treatment adaptation. Open discussions around identity and illness should be encouraged for emotional readiness.

Second, parents and families need more resources and information on transition to support young PwSH and to manage their own responsibility shift. This could help young PwSH gain autonomy. Structured parental involvement can enable progressive self‐management in adolescents. Families should gradually adjust their involvement and support to prevent overprotection and foster independence in disease management.

Third, young PwSH need more education before transitioning to gain a better understanding of their health condition, as well as to acquire health literacy in haemophilia care [40]. Peer interactions between PwSH can be a valuable source of reassurance, helping to communicate with people who share the same experience, offer emotional support, feel less isolated and exchange practical knowledge to facilitate the transition to adulthood.

By viewing transition as a multidimensional process, rather than as a binary success/failure defined by adherence to prophylaxis alone, care models can more effectively promote long‐term well‐being and QoL for young PwSH.

Author Contributions

Marie‐Anaïs ROQUES, Natacha ROSSO‐DELSEMME, Amandine CELLI, Noémie RESSEGUIER, Pascal AUQUIER, Hervé CHAMBOST, Tanguy LEROY, Ngoc Anh Thu NGUYEN, Any BELTRAN ANZOLA, Nicolas GIRAUD, Thomas SANNIE, Thémis APOSTOLIDIS, Thierry CALVEZ and Pierre‐Emannuel MORANGE conceived the design of this study. The investigators of the French Haemophilia Treatment Centres (Laurent ARDILLON, Sophie BAYART, Claire BERGER, Marie‐Anne BERTRAND, Christine BIRON‐ANDREANI, Annie BOREL‐DERLON, Sabine CASTET, Amandine CELLI, Hervé CHAMBOST, Pierre CHAMOUNI, Ségolène CLAEYSSENS DONADEL, Yesim DARGAUD, Emmanuelle DE RAUCOURT, Dominique DESPREZ, Roseline D'OIRON, Céline FALAISE, Alexandra FOURNEL, Birgit FROTSCHER, Valérie GAY, Fabienne GENRE‐VOLOT, Jenny GOUDEMAND, Yves GRUEL, Benoît GUILLET, Annie HARROCHE, Abel HASSOUN, Audrey HOCHART, Yoann HUGUENIN, Thierry LAMBERT, Aurélien LEBRETON, Anne LIENHART, Raphaël MARLU, Michèle MARTIN, Sandrine MEUNIER, Vanessa MILIEN, Fabrice MONPOUX, Guillaume MOUREY, Claude NEGRIER, Philippe NGUYEN, Placide NYOMBE, Caroline OUDOT‐CHALLARD, Brigitte PAN‐PETESCH, Benoît POLACK, Anne RAFOWICZ, Antoine RAUCH, Yohann REPESSE, Delphine RIVAUD, Pierre‐Simon ROHRLICH, Florence ROUSSEAU, Pascale SCHNEIDER, Alexandra SPIEGEL, Cécile STOVEN, Sophie SUSEN, Brigitte TARDY, Marc TROSSAËRT, Jean‐Baptiste VALENTIN, Stéphane VANDERBECKEN, Annelise VOYER‐EBRARD, Bénédicte WIBAUT) enrolled participants. The members of the French Association for people with Haemophilia (BETSCH Carol, COLLE Yannick, GIRAUD Nicolas, SANNIE Thomas) contributed with the communication actions for participants. The members of the FranceCoag registry (Pascal AUQUIER, Karine BAUMSTARCK, Mohamed BOUCEKINE, Hervé CHAMBOST, Vanessa MILIEN, Clémence TABELE, Marie VIPREY, Romain VOLTZENLOGEL) contributed by supplying datasets of the registry. Ngoc Anh Thu NGUYEN, Noémie RESSEGUIER, Marie‐Anaïs ROQUES and Martin POSTZICH performed the analyses. Marie‐Anaïs ROQUES, Noémie RESSEGUIER, Pascal AUQUIER, Hervé CHAMBOST, Ngoc Anh Thu NGUYEN, Any BELTRAN ANZOLA and Martin POSTZICH wrote the draft of the manuscript. All authors critically reviewed the manuscript, provided input on data interpretation, and approval the final version of manuscript.

Disclosures

The authors stated that they had no interests which might be perceived as posing a conflict or bias.

Ethics Statement

The study was approved by the French Ethical Research Committee (reference number 16.065), by the French National Agency for the Safety of Medicines and Health Products (reference number ID RCB: 2016‐A01034‐47) and by the French Data Protection Authority (reference number DR‐2018‐060), whose principles are in line with those of the General Data Protection Regulation. The protocol was registered at ClinicalTrials.gov (NCT02866526). To participate in the quantitative phase of this study, written consent was obtained from the YAs and the parents (or legal representatives) of the adolescents. Additional consent for voice recording was obtained from participants who agreed to participate in the qualitative phase of the study.