Exploring the Role of Telemedicine in Duchenne Muscular Dystrophy: Benefits and Challenges.

IF 2 Q3 HEALTH CARE SCIENCES & SERVICES
Eliza Wasilewska, Andrzej Wasilewski, Alessandro Onofri, Jan Wasilewski, Dominika Sabiniewicz-Ziajka, Agnieszka Sobierajska-Rek, Jarosław Meyer-Szary, Karolina Śledzińska, Jolanta Wierzba, Marek Niedoszytko, Sylwia Małgorzewicz
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引用次数: 0

Abstract

Duchenne muscular dystrophy (DMD) is the most frequent, progressive disease caused by a genetic defect that leads to the production of a nonfunctional form of dystrophin, thereby causing premature death. Ways to improve, adapt, and facilitate the care of people with DMD are still being explored. This viewpoint, developed by an accredited Duchenne center, aims to present current telemedicine options specifically tailored for patients with DMD and to discuss the advantages and limitations of these approaches across various health care domains. As one of the first centers in Poland to implement such an approach, the accredited Duchenne center provides targeted home-based care by using digital platforms and telemedicine tools. Additionally, we explore the potential of telemedicine to support different types of remote communication, including provider-to-provider, between patient/caregiver and provider, and between patient/caregiver and patient/caregiver interactions. This model has the potential to significantly enhance access to specialized care and improve the continuity and quality of life for those living with DMD.

Abstract Image

探索远程医疗在杜氏肌营养不良症中的作用:益处和挑战。
杜氏肌营养不良症(DMD)是由一种遗传缺陷引起的最常见的进行性疾病,这种遗传缺陷导致一种无功能形式的肌营养不良蛋白的产生,从而导致过早死亡。改善、适应和促进DMD患者护理的方法仍在探索中。这一观点是由Duchenne认证中心开发的,旨在介绍目前专门为DMD患者量身定制的远程医疗选择,并讨论这些方法在各种医疗保健领域的优势和局限性。作为波兰首批实施这种方法的中心之一,经过认证的杜chenne中心通过使用数字平台和远程医疗工具提供有针对性的家庭护理。此外,我们还探讨了远程医疗的潜力,以支持不同类型的远程通信,包括提供者对提供者,患者/护理人员和提供者之间,以及患者/护理人员和患者/护理人员之间的互动。这种模式有可能显著提高获得专业护理的机会,并改善DMD患者的生活连续性和质量。
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
JMIR Formative Research
JMIR Formative Research Medicine-Medicine (miscellaneous)
CiteScore
2.70
自引率
9.10%
发文量
579
审稿时长
12 weeks
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