https://orcid.org/0000-0001-6847-2977
Abstract
Purpose
Adolescents and young adults (AYAs) with severe hemophilia use prophylaxis that requires a high level of adherence. The present study aimed to explore the underlying reason for adherence and non-adherence to prophylaxis in hemophilia from the perspective of AYAs.
Patients and Methods
A qualitative study in Dutch AYAs with hemophilia (14–25 years) using prophylaxis was executed. Focus group interviews and individual interviews were recorded, transcribed, coded and analyzed using an iterative process. Member checking in three respondents was used to validate the potential model.
Results
A total of 21 interviews were performed. Parental support decreased when AYAs gained more treatment responsibilities, which resulted in a higher risk for non-adherence. AYAs were weighing their potential bleeding risk per activity based on the wish to do what they prefer while also wanting to simultaneously feel safe. When bleeding with low impact on their daily life occurred, or when bleeding remained absent, AYAs felt safe and the perceived need for prophylaxis decreased.
Conclusion
The level of treatment responsibility per AYA and estimated risks per activity were the two main underlying reasons for (non-)adherence.
Clinical implications
We suggest using a conversation technique to discuss adherence, especially during bleeding assessment visits.
Graphical abstract
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Acknowledgment
We thank all AYAs that participated for their time and openness.
Disclosure
This work was supported by a non-restricted BHAP grant. This work was part of the PhD of J.W. Hoefnagels. Miss J.W. Hoefnagels reports grants from Bayer Hemophilia Awards Program (BHAP), during the conduct of the study. Dr Kathelijn Fischer reports grants from Bayer during the conduct of the study; and grants from Bayer, Pfizer, NovoNordisk, and Baxter, outside the submitted work. Dr L.H. Schrijvers reports grants from Bayer Pharmaceutics during the conduct of the study. The authors report no other conflicts of interest in this work.