Determinants and Consequences of the Transition to Adulthood for Adolescents With Severe Haemophilia: TRANSHEMO 2, an Ancillary Study to the TRANSHEMO Project

Haemophilia is a rare genetic condition where your blood doesn't clot properly. In its severe form, it needs ongoing treatment to prevent serious problems. Thanks to modern medicine, people with haemophilia live much longer and healthier lives than in the past, but it means they manage a long-term health condition.

When teenagers grow into young adults, they go through many changes and gain more independence. For those with a health condition like haemophilia, this time can be even more complicated. They need to learn to take full responsibility for their health and treatment, moving away from their parents managing it all. If this transition doesn’t go smoothly, it might mean they struggle to keep up with treatment, which could affect their health and general well-being.

This study, called TRANSHEMO 2, is a follow-up to an earlier project. The first study found that young adults with severe haemophilia were less likely to stick to their treatment than teenagers. This new study wants to check in with the same people again, now that they are young adults. By looking at how things change over time, the researchers hope to understand more clearly what helps young people manage their haemophilia independently and successfully as they move into adulthood. This will help doctors and healthcare teams offer better support.