Young people’s experience of transition from paediatric to adult haemophilia care in the UK

The ages at which interviewees with bleeding disorders transferred to adult care ranged from 15 to 18 years (Table 1). Interviewees’ descriptions of transition were broadly similar whether they had mild or severe haemophilia.

Only half of interviewees described a transition process that could be said to have been fairly well planned:

In some interviews, there was evidence to suggest that earlier exposure to the adult team during paediatric clinic visits was beneficial to the transition process:

For these patients, the overall experience of transition was positive and ‘undramatic’.

However, one boy who was experiencing transition at the time of his interview said he was not aware of it, while others suggested there was no preparation:

For two patients, there appeared to be no prior discussion of transition or preparation for moving to a new centre:

Indeed, good communication appears to be key to successful transition, and is strongly supported by the responses received from the young people during the interview process. Those who described a positive experience spoke about good communication between the paediatric and adult teams, as well as strong communication with themselves.

Unfortunately, many patients described experiences in which their new adult doctor(s) did not appear to be very well informed about them. While the patients’ feelings about this lack of knowledge from doctors varied, most agreed that this made the transition process feel more impersonal and difficult to adjust to.

Among those participants with severe haemophilia, all began to self-infuse factor replacement therapy well before age 11, and long before the age at which they transferred to adult services. All expressed confidence in managing their treatment, noting they were able to alter the timing of infusions to fit their lifestyle. Mastering self-infusion at an early stage appeared to be a crucial step on the road to independence and it is a key objective in the management of bleeding disorders. A key theme that emerged was that wishing to be more independent from parents was a big motivation towards self-infusion, especially in the context of attending school trips.

By contrast, the three young men with mild haemophilia, who would be unlikely to have received the same level of education about haemophilia by their clinical teams, received factor only in response to bleeds. All said they lacked confidence with self-infusion. One 21-year-old reported that although he usually attends only annual centre visits, recently he had been attending the centre more regularly due to a rising number of injuries and bleeds. However, he had not been asked about the option of learning to self-infuse:

Asked what could have made transition better, one stated:

Our interviews also captured the transition experiences of five young women with vWD. One participant had been seeing an adult haematologist in a non-specialist centre since a family move when she was 14 years of age. Although she had only required intravenous treatment two or three times, she felt the lack of transition was acceptable because she was always with and supported by her mother. However, her experience of medical services raises a different issue:

When asked what could have made the transition process easier, another patient echoed this difficulty:

Women with vWD who are not diagnosed as children clearly miss out on transition and its educational component. One 21-year-old woman with vWD interviewed was diagnosed by an adult haematology service at 18 years of age. She now relies heavily on her mother to manage her condition. Furthermore, her hospital had no haemophilia service so she had received no education around her condition:

Our interviews revealed an example of a significant problem with transition. P13, a 19-year-old student with vWD, had been seen at a paediatric clinic near to her home until the age of 17, after which she had been seen by a new adult doctor when she had bleeding problems. However, she had also recently relocated to attend university, and until the interview was unaware that she could attend a haemophilia centre in her new town instead of travelling home.

Interviews with parents of young people who had moved from paediatric services to adult services suggested that transition can be a difficult time for parents too (Table 2).

Some felt excluded from the process, although they largely accepted the need for a move:

Not all parents felt excluded:

Ultimately, however, parents accepted and welcomed this exclusion as a necessary part of their child’s development, even though it meant watching as they made mistakes:

When asked what could have made the transition process easier, one parent felt that the hospital staff had simply followed established procedures and had overruled their opinions, which had led to conflict. Another stressed that there should have been more preparation:

Another urged centre staff to facilitate introductions to alternative centres, rather than ‘holding on’ to patients:

The interviews revealed that transition tended to take place around the age of 16, although factors such as relocation for university could delay this process. The extent of planning and support for individuals leading up to and during the transfer to adult services varied across the cohort interviewed, with half describing the process as fairly well planned.

For those reporting a positive experience, early exposure to the adult team was described as beneficial to the experience of transfer and was underpinned by good communication, both with themselves and between the paediatric and adult teams. For many, but not all, the transfer to adult services brought with it the need to develop new and different relationships with the clinical team. This is a process that takes time and can be enhanced by the new team being well informed about the person. Some of the interviewees reported an apparent lack of knowledge about them, which was described as making the process feel more impersonal and adding to difficulties in adjusting to the adult service.

Transition takes place at a time of many changes for young people, such as leaving school, taking exams, going to university, leaving home, starting a career and new relationships – all of which need to be factored in when supporting young people with bleeding disorders to successfully transfer to adult services. The young people interviewed all emphasised a need for communication throughout the process, so that they feel informed and prepared for the changes that may happen regarding their care. The best outcomes reported came from those who had experienced clear and effective communication with their clinical team and had prior contact and exposure to members of the adult care team.

Transition to adult services was also a time of change for the parents interviewed, with some welcoming the move to greater independence and others less comfortable with what was happening. Again, a feeling of exclusion was reported by some, reinforcing the need to engage families and carers in preparing for transition.

The interviews emphasise that transition needs to remain true to its definition as a process of changing from one state or condition to another in the context of haemophilia and bleeding disorder care. Abrupt and sudden changes can leave patients feeling uninformed and less in control of their care, which can lead to self-management issues in adult life.

From an early age, those with severe haemophilia tended to be well prepared by their paediatric teams to be confident in self-managing their condition. They learned to self-infuse between the ages of 5–11, and reported feeling confident in tailoring their treatment around their daily routine. Some reported that their transition was not planned, but they did not consider it to have had a negative effect on their transfer to adult care. Interestingly, the interviewees with mild haemophilia reported that their transition was planned, in opposition to the views more commonly expressed in haemophilia care. For the women with vWD who were interviewed, there was rarely a transition process at all. This highlights the importance of ensuring that patients across the spectrum of bleeding disorders are adequately supported during the process of transition.

The interviews highlight the need for a personalised approach to transition, be it young people developing the skills to successfully manage their condition in adult services; services providing support for families and carers to be comfortable with the changes underway; or the provision of planned transition for young people across all bleeding disorders and severities. The interviews also reinforce the need to continue to address the specific needs for women with bleeding disorders as they transfer to adult services, including access to clinicians who are comfortable and confident in discussing women’s issues.

The insights gained from this phase of the Transforming Transition programme were submitted to NICE as part of the consultation on its guideline on transition from children’s to adult services [2].