Geonnotti Gabrielle, Pesa Jacqueline, Peters Wesley, Taylor Melina, Choudhry Zia, Falope Oluyemisi, Price Marquetta, Baxter Lucy, West Bruce, Shea Lisa
Janssen Scientific Affairs, LLC Titusville New Jersey USA.
Evidera Wilmington North Carolina USA.
Health Sci Rep. 2024 Dec 17;7(12):e70230. doi: 10.1002/hsr2.70230. eCollection 2024 Dec.
An exploratory focus group study was conducted to better understand the needs of patients living with generalized myasthenia gravis (gMG).
US-based adults with gMG and caregivers of patients with gMG participated in a Patient Engagement Research Council between August 2022 and January 2023. The study consisted of a 15-min prework survey, followed by virtual focus groups facilitated using a semi-structured interview guide. Data concepts were identified using conversational analysis and by direct observation. All transcripts were coded based on concepts using a qualitative research analysis program (MaxQDA).
16 participants (13 patients, three caregivers) were recruited. Participants reported impact on daily activities, fatigue, and psychosocial problems. Many participants experienced delayed diagnosis and difficulty accessing specialist care. Participants described multiple barriers related to their gMG, including barriers to treatment, access-related issues, and communication disconnect between patients and healthcare professionals. Achieving stable disease was the most important goal. There was a preference for the autonomy of self-administered medications at home versus infusions. Study insights led to recommendations to guide patient and healthcare professional education.
The study illustrates the need to improve access to specialist care, achieve earlier diagnosis, prioritize patients' preferences in disease management, and develop treatments that improve outcomes without additional burden.
The data collected in this study was provided by the focus group participants, which included patients and caregivers of those with myasthenia gravis.
开展了一项探索性焦点小组研究，以更好地了解全身型重症肌无力（gMG）患者的需求。
2022年8月至2023年1月期间，美国的gMG成年患者及gMG患者的照护者参与了患者参与研究委员会。该研究包括一项15分钟的前期调查，随后是使用半结构化访谈指南进行的虚拟焦点小组讨论。通过对话分析和直接观察确定数据概念。所有转录本均使用定性研究分析程序（MaxQDA）基于概念进行编码。
招募了16名参与者（13名患者，3名照护者）。参与者报告了对日常活动、疲劳和心理社会问题的影响。许多参与者经历了诊断延迟和获得专科护理的困难。参与者描述了与他们的gMG相关的多个障碍，包括治疗障碍、与获得医疗服务相关的问题以及患者与医疗保健专业人员之间的沟通脱节。实现疾病稳定是最重要的目标。相比于输液，患者更倾向于在家自行给药的自主性。研究见解促成了指导患者和医疗保健专业人员教育的建议。
该研究表明需要改善专科护理的可及性、实现更早诊断、在疾病管理中优先考虑患者的偏好，并开发在不增加额外负担的情况下改善治疗效果的疗法。
本研究收集的数据由焦点小组参与者提供，其中包括重症肌无力患者及其照护者。
