Hoefnagels J W, Kars M C, Fischer K, Schutgens Reg, Schrijvers L H
Van Creveldkliniek, University Medical Center Utrecht, Utrecht, the Netherlands.
Department of General Practice, Julius Center for Health Sciences and Primary Care, University Medical Center Utrecht, Utrecht, the Netherlands.
Patient Prefer Adherence. 2020 Jan 23;14:163-171. doi: 10.2147/PPA.S232393. eCollection 2020.
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, especially during bleeding assessment visits.
患有严重血友病的青少年和青年（AYA）使用预防治疗需要高度的依从性。本研究旨在从AYA的角度探讨血友病患者坚持和不坚持预防治疗的潜在原因。
对荷兰14至25岁使用预防治疗的血友病AYA进行了一项定性研究。采用迭代过程对焦点小组访谈和个人访谈进行记录、转录、编码和分析。通过对三名受访者进行成员核对来验证潜在模型。
共进行了21次访谈。当AYA承担更多治疗责任时，父母的支持会减少，这导致不依从的风险更高。AYA根据自己的意愿权衡每项活动的潜在出血风险，同时也希望感到安全。当对日常生活影响较小的出血发生时，或者当没有出血时，AYA会感到安全，对预防治疗的感知需求也会降低。
每个AYA的治疗责任水平和每项活动估计的风险是（不）依从的两个主要潜在原因。
我们建议使用一种谈话技巧来讨论依从性，尤其是在出血评估就诊期间。
