THE PROBLEM OF THERAPEUTIC ADHERENCE IN YOUNG HAEMOPHILIACS

Nowadays, it is possible to avoid the complications of haemophilia thanks to replacement therapies for which the issue of adherence is of paramount importance, along with regular clinical follow-up that lasts a lifetime. Successful transition from adolescence to adulthood may therefore be critical to maintaining adherence to care.

In the context of chronic disease, the transition process can be more complicated, as the affected young people an additional transition, from a paediatric to an adult health care system. A successful transition involves a transfer of responsibility from parents to patients regarding the management of their health, the acquisition of the knowledge, skills, and self-sufficiency needed to become independent, and the new roles people expect them to assume as adults.

In the case of haemophilia, there are difficulties that can compromise the health of young patients. A study of unmet needs reported by young adults with haemophilia revealed issues primarily related to achieving independence. At the crucial age when adolescents are often averse to or want to make their own decisions, maintaining adherence to clinical follow-up and treatment is a critical issue. Reduced adherence could, in fact, have serious consequences, such as haemarthrosis, which can impair daily activities and quality of life.

 

Reference:

  • Resseguier N, Rosso-Delsemme N, Beltran Anzola A, et al. Determinants of adherence and consequences of the transition from adolescence to adulthood among young people with severe haemophilia (TRANSHEMO): study protocol for a multicentric French national observational cross- sectional study. BMJ Open 2018;8:e022409. doi:10.1136/ bmjopen-2018-022409
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Wikiphilia

Learn more about the meaning of the words you read on this page and learn about the entire glossary on hemophilia.

A ereditary genetic illness, characterised by a deficiency of clotting factor VIII, that exposes the individual to a greater risk of both internal and external bleeds.

Haemophilia A is more common in males, whereas females tend to be healthy carriers of the condition.

The typical symptoms of the condition include haemarthroses (joint bleeds) and haematomas (muscle bleeds).

Condition that occurs when factor VIII activity is between 1% and 5%.

Condition that occurs when factor VIII activity is between 1% and 5%.

Condition that occurs when factor VIII activity is <1%.