Weaver Stephanie Sargent, Carry Monique, Bertolli Jeanne, Godino Job, Struminger Bruce, Taren Douglas, Scott John D, Sharp Sydney P, Samaniego Jane, Bean Donna R, Issa Anindita, Lin Jin-Mann S, Unger Elizabeth R, Ramers Christian B
Centers for Disease Control and Prevention, National Center for Emerging and Zoonotic Infectious Diseases, Chronic Viral Diseases Branch, Atlanta, GA, United States.
Centers for Disease Control and Prevention, Global Health Center, HIV Prevention Branch, Atlanta, GA, United States.
Front Health Serv. 2025 Jun 27;5:1562651. doi: 10.3389/frhs.2025.1562651. eCollection 2025.
Long COVID, myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), and other poorly understood post-acute infection syndromes (PAIS) can present with unexplained symptoms or conditions that may be misunderstood by healthcare providers, causing delays in diagnosis and care. To address these issues, the Centers for Disease Control and Prevention (CDC) funded the Long COVID and Fatiguing Illness Recovery Program (LC&FIRP), initiated as a pilot project to assess whether providing tele-mentoring and other online education for primary care providers could help them improve the quality of life and support the recovery of their patients with these conditions. The LC&FIRP multi-disciplinary team-based care approach is built on the Extension for Community Healthcare Outcomes (ECHO) learning model, which is an evidence-based virtual learning framework developed by the University of New Mexico and designed to disseminate and implement best practices, especially in under-resourced areas. A distinctive feature of LC&FIRP was the inclusion of lived-experience experts. To explore the influence of lived-experience experts on the care patients received, we collected the educational recommendations provided by the lived-experience experts during webinar sessions (January 2022-March 2024) and grouped these by themes. The major themes that emerged included validation of patients' illness experience; attitudes and beliefs about Long COVID, ME/CFS, and PAIS; understanding patients' challenges and communicating with empathy; navigating referrals; recognizing and supporting disability; and supporting self-care. Investigators also interviewed patients of the Family Health Centers of San Diego (FHCSD) about their experiences receiving care from participating primary care providers and employed content analysis methods to code interview transcripts to identify themes among patients' perspectives. Positive comments from the patients about topics emphasized by the lived-experience experts provided evidence of providers' uptake and application of the experts' recommendations and support the value of involving lived-experience experts in medical education to improve health services.
长期新冠、肌痛性脑脊髓炎/慢性疲劳综合征（ME/CFS）以及其他了解甚少的急性感染后综合征（PAIS）可能会出现一些无法解释的症状或状况，而这些症状或状况可能会被医疗服务提供者误解，从而导致诊断和治疗的延误。为了解决这些问题，美国疾病控制与预防中心（CDC）资助了长期新冠与疲劳性疾病康复项目（LC&FIRP），该项目最初作为一个试点项目启动，旨在评估为初级保健提供者提供远程指导和其他在线教育是否有助于他们提高患者的生活质量并支持这些患者康复。LC&FIRP基于多学科团队的护理方法建立在社区医疗成果扩展（ECHO）学习模式之上，这是新墨西哥大学开发的一个基于证据的虚拟学习框架，旨在传播和实施最佳实践，尤其是在资源匮乏地区。LC&FIRP的一个显著特点是纳入了有实际生活经验的专家。为了探究有实际生活经验的专家对患者所接受护理的影响，我们收集了这些专家在网络研讨会期间（2022年1月至2024年3月）提供的教育建议，并按主题进行了分类。出现的主要主题包括对患者疾病经历的认可；对长期新冠、ME/CFS和PAIS的态度和信念；理解患者的挑战并进行共情沟通；安排转诊；认识和支持残疾问题；以及支持自我护理。研究人员还采访了圣地亚哥家庭健康中心（FHCSD）的患者，了解他们从参与项目的初级保健提供者那里接受护理的经历，并采用内容分析方法对访谈记录进行编码，以确定患者观点中的主题。患者对有实际生活经验的专家所强调主题的积极评价，证明了提供者采纳并应用了专家的建议，也支持了让有实际生活经验的专家参与医学教育以改善医疗服务的价值。
