In a population of people with severe hemophilia (PwSH), a recent study found that adolescents showed a higher rate of adherence to healthcare than young adults did. The study findings were reported in the journal Haemophilia.

The multicenter, observational, cross-sectional study was part of the quantitative phase of the TRANSHEMO project. The study was conducted from 2017 through 2019 and included participants of the FranceCoag registry.

Because the transition in age between adolescence and young adulthood may impact access to healthcare, the study investigators aimed to evaluate adherence to healthcare in PwSH, with adherence compared between adolescents (age 14 through 17 years) and young adults (age 20 through 29 years). The investigators also had a goal of identifying determinants of adherence and any associations between them.

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Healthcare adherence in this study was assessed based on several criteria. These included the number of follow-up visits in the prior 2 years, physician-reported adherence to clinical follow-up, patient-reported adherence to clinical follow-up, number of prophylactic injections over the prior 3 months (in patients on prophylaxis), physician-reported adherence to prophylaxis (in patients on prophylaxis), patient-reported adherence to treatment, and the physician-reported number of hemorrhagic events over the prior 2 years. Other patient characteristics were also evaluated in the study.

The study included 277 participants, of whom 107 were adolescents and 170 were young adults. Rates of adherence to healthcare were 82.2% among adolescents and 61.2% among young adults (P <.001).

Adolescents also showed higher rates of adherence across all evaluated criteria. Adolescents particularly had higher rates of physician-reported adherence to clinical follow-up, at a 22.9% higher rate, in comparison with young adults (P <.001). Adolescents receiving prophylaxis also showed a 26.6% higher rate of adherence to prophylaxis than young adults on prophylaxis did (P <.001).

The investigators identified factors with a negative impact on healthcare adherence in the study population. These included being in the young-adult age group (odds ratio [OR], 0.64; 95% CI, 0.41-0.99), a history of repeating at least 1 school grade (OR, 0.47,; 95% CI, 0.31-0.71), and demonstrating mental health concerns (OR, 0.37; 95% CI, 0.15-0.94).

“During the transition from adolescence to adulthood, like other people, young PwSH may have pressures and changes in their life when they move out of their parents’ house, adapt to lifestyle changes, have new relationships and make a career,” the study investigators wrote in their report. They also noted that young PwSH face the additional challenge of managing their condition.

The investigators indicated that healthcare professionals can provide strategies and adapted therapeutic educational programs to help support young PwSH with treatment adherence in accordance with patient characteristics.


Nguyen NAT, Auquier P, Beltran Anzola A, et al; the TRANSHEMO Study Group. Determinants of adherence and consequences of the transition from adolescence to adulthood among young people with severe haemophilia (TRANSHEMO): a multicentric French national observational cross-sectional study based on the FranceCoag registry. Haemophilia. Published online August 12, 2023. doi:10.1111/hae.14841