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Patient and parent preferences for characteristics of prophylactic treatment in hemophilia

机译：患者和父母对血友病预防治疗特征的偏爱

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Introduction: New longer-acting factor products will potentially allow for less frequent infusion in prophylactic treatment of hemophilia. However, the role of administration frequency relative to other treatment attributes in determining preferences for prophylactic hemophilia treatment regimens is not well understood. Aim: To identify the relative importance of frequency of administration, efficacy, and other treatment characteristics among candidates for prophylactic treatment for hemophilia A and B. Method: An Internet survey was conducted among hemophilia patients and the parents of pediatric hemophilia patients in Australia, Canada, and the US. A monadic conjoint task was included in the survey, which varied frequency of administration (three, two, or one time per week for hemophilia A; twice weekly, weekly, or biweekly for hemophilia B), efficacy (no bleeding or breakthrough bleeding once every 4?months, 6?months, or 12?months), diluent volume (3?mL vs 2.5?mL for hemophilia A; 5?mL vs 3?mL for hemophilia B), vials per infusion (2 vs 1), reconstitution device (assembly required vs not), and manufacturer (established in hemophilia vs not). Respondents were asked their likelihood to switch from their current regimen to the presented treatment. Respondents were told to assume that other aspects of treatment, such as risk of inhibitor development, cost, and method of distribution, would remain the same. Results: A total of 89 patients and/or parents of children with hemophilia A participated; another 32 were included in the exercise for hemophilia B. Relative importance was 47%, 24%, and 18% for frequency of administration, efficacy, and manufacturer, respectively, in hemophilia A; analogous values were 48%, 26%, and 21% in hemophilia B. The remaining attributes had little impact on preferences. Conclusion: Patients who are candidates for prophylaxis and their caregivers indicate a preference for reduced frequency of administration and high efficacy, but preferences were more sensitive to administration frequency than small changes in annual bleeding rate.
机译：简介：新的长效因子产品可能会减少血友病预防治疗中的输注频率。但是，在确定预防性血友病治疗方案的偏爱方面，给药频率相对于其他治疗属性的作用尚不清楚。目的：确定在预防甲型和乙型血友病的候选人中给药频率，疗效和其他治疗特征的相对重要性。方法：对澳大利亚，加拿大的血友病患者和儿科血友病患者的父母进行了互联网调查，以及美国。该调查包括一项单身联合任务，其给药频率不同（血友病A每周三，两次或一次;血友病B每周两次，每周或每两周两次），疗效（每次无出血或突破性出血） 4个月，6个月或12个月），稀释液体积（血友病A：3？mL vs 2.5？mL;血友病B：5？mL vs 3？mL），每次输注小瓶（2对1），重建设备（需要组装或不需要组装）和制造商（血友病建立与否）。受访者被问及从当前治疗方案转向目前治疗方案的可能性。告知受访者，治疗的其他方面（例如抑制剂发展的风险，成本和分配方法）将保持不变。结果：共有89例A型血友病患儿和/或父母参加;血友病B的锻炼中还包括32个。血友病A的相对频率分别为47％，24％和18％。血友病B中的相似值分别为48％，26％和21％。其余属性对偏好的影响很小。结论：可以预防的患者及其护理人员表明，他们倾向于降低给药频率和提高疗效，但与每年出血率的微小变化相比，这种选择对给药频率更为敏感。

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