Attitudes and Beliefs Toward Thymectomy in the Myasthenia Gravis Patient Registry.

Q3 Medicine Journal of Clinical Neuromuscular Disease Pub Date : 2023-06-01 DOI:10.1097/CND.0000000000000449

Ali G Hamedani, Tarrant O McPherson, Inmaculada Aban, Ikjae Lee, Mark J Kupersmith, Gil I Wolfe, Henry J Kaminski

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Abstract

Objectives: To evaluate patient attitudes and beliefs toward thymectomy for myasthenia gravis (MG).

Methods: The Myasthenia Gravis Foundation of America administered a questionnaire to the MG Patient Registry, an ongoing longitudinal survey of adult MG patients. Questions assessed reasons for or against thymectomy and how hypothetical scenarios would have affected their decision.

Results: Of 621 respondents, 190 (31%) reported a history of thymectomy. Of those who underwent thymectomy for nonthymomatous MG, 97 (51.6%) ranked symptom improvement as most important and 100 (53.2%) ranked reducing medication as least important. Among 431 nonthymectomy patients, the most frequent reason for not undergoing thymectomy was that their doctor did not discuss it (152 of 431 = 35.2%) and 235 (56.8%) said that they would have considered it more strongly if their doctor spent more time discussing it.

Conclusions: Thymectomies are motivated more by symptoms than by medication, and a lack of neurologist discussion is the most common barrier to thymectomy.

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肌无力患者登记处对胸腺切除术的态度和信念。

目的：评估患者对胸腺切除术治疗肌无力（MG）的态度和信念：评估患者对胸腺切除术治疗重症肌无力（MG）的态度和信念：美国重症肌无力基金会向重症肌无力患者登记处发放了一份调查问卷，该登记处正在对成年重症肌无力患者进行纵向调查。问题包括支持或反对胸腺切除术的原因，以及假设情况会如何影响他们的决定：在621名受访者中，190人（31%）曾接受胸腺切除术。在因非胸腺瘤性 MG 而接受胸腺切除术的受访者中，97 人（51.6%）认为改善症状最重要，100 人（53.2%）认为减少用药最不重要。在431名未接受胸腺切除术的患者中，不接受胸腺切除术的最常见原因是医生没有讨论过这个问题（431人中有152人=35.2%），235人（56.8%）表示如果医生花更多时间讨论这个问题，他们会更坚定地考虑接受胸腺切除术：胸腺切除术的动机更多是症状而非药物治疗，缺乏神经科医生的讨论是胸腺切除术最常见的障碍。

本文章由计算机程序翻译，如有差异，请以英文原文为准。

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来源期刊

Journal of Clinical Neuromuscular Disease Medicine-Medicine (all)

CiteScore

1.60

自引率

0.00%

发文量

期刊介绍： Journal of Clinical Neuromuscular Disease provides original articles of interest to physicians who treat patients with neuromuscular diseases, including disorders of the motor neuron, peripheral nerves, neuromuscular junction, muscle, and autonomic nervous system. Each issue highlights the most advanced and successful approaches to diagnosis, functional assessment, surgical intervention, pharmacologic treatment, rehabilitation, and more.