醫病共享決策於重度肌無力症

Shared Decision Making in Myasthenia Gravis

經確診為肌無力症的患者，在疾病病程中，有時會遭遇全身肌肉無力或呼吸肌肉無力的症狀，而導致有生命危險的病患，即為重度肌無力。重度肌無力患者的用藥選擇從治療方式、症狀緩解時間、到價格均有所不同，治療選擇除了醫師的臨床評估外，大多也取決於病人／病人家屬在意的決策要素。本研究目的為利用實證手法與跨領域團隊合作，建立符合實證與病人偏好的醫病共享決策輔助工具（Patient Decision Aids, PDAs），增加病人對該決策的知識，以供病人與醫療人員共享決策（Shared-decision making, SDM）。跨領域團隊以會議形式討論PDA製作方向及工作進程，並將開發的初版PDA進行兩項測試後，做成最終版本。研究結果提供重度肌無力病人治療上的選擇，且以實證為基礎做出的PDA，未來將應用於實際病人，進一步收集相關數據。

Patients diagnosed with myasthenia gravis, may suffer from life-threatening condition due to general weakness or respiratory muscle weakness. The medication options for patients with myasthenia gravis vary from treatment methods, time to symptom relief, and to prices. In addition to the clinical evaluation of the physician, most of the treatment options depend on the preference of patient and patient's family. The purpose of this research is to establish Patient Decision Aids (PDAs) that meet the empirical evidence and patient preferences to increase the patient’s knowledge of the decision and to help patients and medical staff with Shared-Decision Making (SDM). A collaborative team was formed to discuss the working process, and developed first version PDA into final version after alpha and beta tests. The study provided treatment options for patients with myasthenia gravis, and the PDA based on evidence will be applied to patients in the future and continue update according to relevant data.