Faegre Drinker Biddle and Reath, LLP, Washington, District of Columbia, USA.
Milken Institute School of Public Health, The George Washington University, Washington, District of Columbia, USA.
Telemed J E Health. 2024 Feb;30(2):536-544. doi: 10.1089/tmj.2023.0293. Epub 2023 Aug 11.
Telemedicine may increase access to clinical care, particularly for mobility-limited communities such as the spinal muscular atrophy (SMA) community. However, much of the information on exposure to and attitudes toward telemedicine in neuromuscular diseases generally and SMA specifically is anecdotal or from focus groups. Gaining greater insight into patient perspectives is important, given telemedicine's potential for expanding access to care and growing use of telemedicine as a result of technology advances and the COVID-19 pandemic. Cure SMA collected information on the SMA community's exposure to, comfort with, and perceived effectiveness of telemedicine through its 2021 Community Update Survey. The final analytic sample represented 463 SMA-affected individuals, resident in the United States. Descriptive analyses, correlations, and ordered logit regression models were used to characterize the sample and identify predictors of exposure, comfort, and perceived effectiveness. Data were analyzed on weighted and unweighted bases to account for differences between the survey sample and the SMA community. Stratified analyses were used to compare self-completed surveys with caregiver-completed surveys. 463 individuals answered questions about telemedicine. Approximately four-fifths of these respondents had used telemedicine previously. Factors predicting greater likelihood of prior telemedicine use included male gender, increasing income, having received drug treatment for SMA, history of mental illness, and having non-neutral views regarding comfort and perceived effectiveness of telemedicine. Several factors were also significant predictors of comfort with and perceived effectiveness of telemedicine. Stratified analyses indicated differences between self-completed and caregiver-completed surveys. These results can provide insight into patient experiences with telemedicine and can inform approaches to its use by health care professionals and clinical trial sponsors.
远程医疗可能会增加获得临床护理的机会，特别是对于行动不便的社区，如脊髓性肌萎缩症（SMA）社区。然而，关于神经肌肉疾病，特别是 SMA 中远程医疗的接触和态度的大部分信息都是轶事或来自焦点小组。鉴于远程医疗有可能扩大获得护理的机会，并且由于技术进步和 COVID-19 大流行，远程医疗的使用越来越多，因此深入了解患者的观点非常重要。Cure SMA 通过其 2021 年社区更新调查收集了有关 SMA 社区接触、舒适度和对远程医疗的感知效果的信息。最终的分析样本代表了居住在美国的 463 名受 SMA 影响的个体。使用描述性分析、相关性和有序逻辑回归模型来描述样本，并确定接触、舒适度和感知效果的预测因素。基于加权和未加权基础分析数据，以考虑到调查样本与 SMA 社区之间的差异。分层分析用于比较自我完成的调查和护理人员完成的调查。463 人回答了有关远程医疗的问题。这些受访者中约有五分之四之前曾使用过远程医疗。预测先前使用远程医疗的可能性更大的因素包括男性性别、收入增加、接受 SMA 药物治疗、精神病史以及对远程医疗的舒适度和感知效果持非中立观点。还有几个因素也是舒适度和远程医疗感知效果的重要预测因素。分层分析表明自我完成的调查和护理人员完成的调查之间存在差异。这些结果可以提供有关患者远程医疗体验的见解，并为医疗保健专业人员和临床试验赞助商使用远程医疗的方法提供信息。
