Martinez-Harms Rodrigo, Barnett Carolina, Bril Vera
Ellen & Martin Prosserman Centre for Neuromuscular Diseases, Toronto General Hospital, Toronto, ON, Canada.
Department of Medicine, University Health Network, University of Toronto, Toronto, ON, Canada.
Front Neurol. 2023 Jun 16;14:1187189. doi: 10.3389/fneur.2023.1187189. eCollection 2023.
The patient acceptable symptom state (PASS) is a reliable way to characterize a patient's satisfaction with their disease state in a "Yes"/"No" dichotomous manner. There is limited data on the time required to reach an acceptable state in Myasthenia Gravis (MG). We aimed to determine the time to reach a first PASS "Yes" response in patients at MG diagnosis and a PASS "No" status, and also to determine the influence of various factors on this time.
We performed a retrospective study of patients diagnosed with myasthenia gravis who had an initial PASS "No" response and defined the time to reach a first PASS "Yes" by Kaplan-Meier analysis. Correlations were made between demographics, clinical characteristics, treatment and disease severity, using the Myasthenia Gravis Impairment Index (MGII) and Simple Single Question (SSQ).
In 86 patients meeting inclusion criteria, the median time to PASS "Yes" was 15 months (95% CI 11-18). Of 67 MG patients who achieved PASS "Yes," 61 (91%), achieved it by 25 months after diagnosis. Patients who required only prednisone therapy achieved PASS "Yes" in a shorter time with a median of 5.5 months ( = 0.01). Very-late-onset MG patients reached PASS "Yes" status in a shorter time (HR = 1.99, 95% CI 0.26-2.63; = 0.001).
Most patients reached PASS "Yes" by 25 months after diagnosis. MG patients who only required prednisone and those with very-late-onset MG reach PASS "Yes" in shorter intervals.
患者可接受症状状态（PASS）是一种以“是”/“否”二分法来描述患者对其疾病状态满意度的可靠方法。关于重症肌无力（MG）患者达到可接受状态所需时间的数据有限。我们旨在确定MG诊断时患者首次给出PASS“是”反应以及PASS“否”状态的时间，并确定各种因素对该时间的影响。
我们对诊断为重症肌无力且初始PASS反应为“否”的患者进行了一项回顾性研究，并通过Kaplan-Meier分析确定达到首次PASS“是”的时间。使用重症肌无力损伤指数（MGII）和简单单问题（SSQ）对人口统计学、临床特征、治疗和疾病严重程度之间进行相关性分析。
在86名符合纳入标准的患者中，达到PASS“是”的中位时间为15个月（95%CI 11 - 18）。在67名达到PASS“是”的MG患者中，61名（91%）在诊断后25个月内达到。仅需泼尼松治疗的患者达到PASS“是”的时间较短，中位时间为5.5个月（P = 0.01）。极晚发型MG患者达到PASS“是”状态的时间较短（HR = 1.99，95%CI 0.26 - 2.63；P = 0.001）。
大多数患者在诊断后25个月内达到PASS“是”。仅需泼尼松治疗的MG患者以及极晚发型MG患者达到PASS“是”的时间间隔较短。
