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Telemedicine for the Care of Patients with Idiopathic Inflammatory Myopathies: Experience, Insights and Future Directions from the International Myositis Assessment and Clinical Studies Telemedicine Scientific Interest Group.用于特发性炎性肌病患者护理的远程医疗：来自国际肌炎评估与临床研究远程医疗科学兴趣小组的经验、见解及未来方向
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2
The Dermatomyositis Disease Symptom Questionnaire (DM-DSQ): A Measure to Assess the Patient Experience of Dermatomyositis Symptoms.皮肌炎疾病症状问卷 (DM-DSQ)：评估皮肌炎症状患者体验的一种测量方法。
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3
Embracing unity at OMERACT: Valuing equity, promoting diversity, fostering inclusivity.在 OMERACT 会议上倡导团结：重视公平，促进多样性，培养包容性。
Semin Arthritis Rheum. 2024 Jun;66:152422. doi: 10.1016/j.semarthrit.2024.152422. Epub 2024 Feb 29.
4
Home-Based Telemedicine in Rheumatology-A Scoping Review.风湿病学中的家庭远程医疗——一项范围综述
ACR Open Rheumatol. 2024 May;6(5):312-320. doi: 10.1002/acr2.11660. Epub 2024 Mar 8.
5
The Type 1 & 2 systemic lupus erythematosus model: Perspectives of people living with systemic lupus erythematosus.1 型和 2 型系统性红斑狼疮模型：系统性红斑狼疮患者的观点。
Lupus. 2024 Mar;33(3):266-272. doi: 10.1177/09612033241228343. Epub 2024 Jan 18.
6
Discordance between patient- and physician-reported disease activity in adult idiopathic inflammatory myopathy.成人特发性炎性肌病中患者报告与医生报告的疾病活动的差异。
Rheumatology (Oxford). 2023 Dec 1;62(12):3957-3961. doi: 10.1093/rheumatology/kead316.
7
Reliability and validity of PROMIS physical function, pain interference, and fatigue as patient reported outcome measures in adult idiopathic inflammatory myopathies: International study from the OMERACT myositis working group.PROMIS 物理功能、疼痛干扰和疲劳作为成人特发性炎性肌病患者报告结局测量的可靠性和有效性：OMERACT 肌炎工作组的国际研究。
Semin Arthritis Rheum. 2023 Feb;58:152111. doi: 10.1016/j.semarthrit.2022.152111. Epub 2022 Nov 3.
8
Trial of Intravenous Immune Globulin in Dermatomyositis.皮肌炎的静脉注射免疫球蛋白治疗试验。
N Engl J Med. 2022 Oct 6;387(14):1264-1278. doi: 10.1056/NEJMoa2117912.
9
Updated Guidance on the Reporting of Race and Ethnicity in Medical and Science Journals.医学与科学期刊中种族与民族报告的更新指南。
JAMA. 2021 Aug 17;326(7):621-627. doi: 10.1001/jama.2021.13304.
10
Comparison of Patient-Reported Outcomes Measurement Information System Computerized Adaptive Testing Versus Fixed Short Forms in Juvenile Myositis.患者报告结局测量信息系统计算机化自适应测验与青少年皮肌炎固定短式量表的比较。
Arthritis Care Res (Hoboken). 2023 Feb;75(2):381-390. doi: 10.1002/acr.24760. Epub 2022 Aug 31.

Ringing in the Patient Voice: Measuring Patients' Lived Experience of Dermatomyositis Symptoms.

作者信息

Ardalan Kaveh, Rider Lisa G

机构信息

K. Ardalan, MD, MS, Duke Children's Myositis Center Cure JM Center of Excellence, Department of Pediatrics, Division of Pediatric Rheumatology, Duke University School of Medicine, Durham, North Carolina.

L.G. Rider, MD, Environmental Autoimmunity Group, Clinical Research Branch, National Institute of Environmental Health Sciences, National Institutes of Health, Bethesda, Maryland, USA.

出版信息

J Rheumatol. 2024 Dec 1;51(12):1156-1159. doi: 10.3899/jrheum.2024-0951.

DOI:10.3899/jrheum.2024-0951
PMID:39486855
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC11611614/
Abstract
摘要