Takeda, 650 East Kendall Street, Cambridge, MA 02142, USA.
Columbia University Irving Medical Center, 632 W168th Street, New York, NY 10032, USA.
Immunotherapy. 2023 Jun;15(9):647-656. doi: 10.2217/imt-2022-0193. Epub 2023 May 9.
To describe development of a shared decision making (SDM) aid in treating primary immunodeficiency diseases (PID) with immunoglobulin replacement therapy (IGRT). Expert engagement and qualitative formative research informed development. IGRT administration features were prioritized using object-case best-worst scaling (BWS) methodology. The aid was assessed by US adults self-reporting PID and revised following interviews/mock treatment-choice discussions with immunologists. Patients participating in interviews (n = 19) and mock treatment-choice discussions (n = 5) deemed the aid useful/accessible and supported the utility of BWS, with content and BWS exercises refined following participant feedback. Formative research led to an improved SDM aid/BWS exercise, and illustrated how the aid may improve treatment decision making. The aid may help less-experienced patients and facilitate efficient SDM.
描述一种用于治疗原发性免疫缺陷病（PID）的免疫球蛋白替代疗法（IGRT）的共享决策辅助工具的开发。专家参与和定性形成性研究为开发提供了信息。使用对象案例最佳最差标度（BWS）方法对 IGRT 管理特征进行了优先级排序。该辅助工具由自我报告 PID 的美国成年人进行评估，并在与免疫学家进行访谈/模拟治疗选择讨论后进行修订。参与访谈的患者（n=19）和模拟治疗选择讨论的患者（n=5）认为该辅助工具有用/易于使用，并支持 BWS 的实用性，根据参与者的反馈对内容和 BWS 练习进行了改进。形成性研究导致了改进的 SDM 辅助工具/BWS 练习，并说明了该辅助工具如何改善治疗决策。该辅助工具可能有助于经验较少的患者并促进有效的 SDM。
