The Perspectives of Adolescents and Young Adults on Adherence to Prophylaxis in Hemophilia: A Qualitative Study

Patient Preference and Adherence
J W HoefnagelsL H Schrijvers

Abstract

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. 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. 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. The level of treatment responsibility per AYA and estimated risks per activity were the two main underlying reasons for (non-)adherence. We suggest using a conversation technique to discuss adherence, espe...Continue Reading

Citations

Jun 2, 2020·Haemophilia : the Official Journal of the World Federation of Hemophilia·Johanna Wilhelmina HoefnagelsKathelijn Fischer
May 22, 2021·Haemophilia : the Official Journal of the World Federation of Hemophilia·Johanna Wilhelmina HoefnagelsUNKNOWN Haemophilia in the Netherlands 6 Steering Group

❮ Previous
Next ❯

Software Mentioned

NVivo

Related Concepts

Related Feeds

Blood Clotting Disorders

Thrombophilia includes conditions with increased tendency for excessive blood clotting. Blood clotting occurs when the body has insufficient amounts of specialized proteins that make blood clot and stop bleeding. Here is the latest research on blood clotting disorders.

Related Papers

European Journal of Oncology Nursing : the Official Journal of European Oncology Nursing Society
Meghan E McGradyAhna L H Pai
Adolescent Health, Medicine and Therapeutics
Anne Marie Kleinke, Carl Friedrich Classen
© 2021 Meta ULC. All rights reserved