{"id":2429,"date":"2022-10-27T10:47:27","date_gmt":"2022-10-27T08:47:27","guid":{"rendered":"http:\/\/grupo.us.es\/healthterritory\/?p=2429"},"modified":"2022-10-27T13:48:21","modified_gmt":"2022-10-27T11:48:21","slug":"exploring-the-role-of-rheumatic-and-musculoskeletal-disease-patient-organisations-during-the-covid-19-pandemic-results-from-the-reumavid-study-phase-1","status":"publish","type":"post","link":"https:\/\/grupo.us.es\/healthterritory\/en\/exploring-the-role-of-rheumatic-and-musculoskeletal-disease-patient-organisations-during-the-covid-19-pandemic-results-from-the-reumavid-study-phase-1\/","title":{"rendered":"Exploring the role of rheumatic and musculoskeletal disease patient organisations during the COVID-19 pandemic: results from the REUMAVID study (phase 1)"},"content":{"rendered":"<h2>Exploring the role of rheumatic and musculoskeletal disease patient organisations during the COVID-19 pandemic: results from the REUMAVID study (phase 1)<\/h2>\n<p>Marco Garrido-Cumbrera, Helena Marzo-Ortega, Laura Christen, Jos\u00e9 Correa-Fern\u00e1ndez, Sergio Sanz-G\u00f3mez, Victoria Navarro-Comp\u00e1n, REUMAVID Working Group.<\/p>\n<p>Clin Exp Rheumatol. 2022.<\/p>\n<h3><strong>Objective<\/strong><\/h3>\n<p>This study aims to assess the role of RMD POs during the COVID-19 pandemic.<\/p>\n<h3><strong>Methods<\/strong><\/h3>\n<p>REUMAVID\u00a0 is\u00a0 an\u00a0 international\u00a0 collabo-ration led by Health &amp; Territory Research (HTR) from the University of Seville, together\u00a0 with\u00a0 a\u00a0 multidisciplinary\u00a0 working group\u00a0 comprising\u00a0 rheumatologists,\u00a0 health\u00a0 care\u00a0\u00a0 professionals\u00a0\u00a0 and\u00a0\u00a0 researchers,\u00a0\u00a0 and\u00a0\u00a0 PO\u00a0 representatives\u00a0 from\u00a0 seven\u00a0 European countries:\u00a0 Cyprus,\u00a0 France,\u00a0 Greece,\u00a0 Italy, Portugal, Spain, and the United Kingdom. Further details about the study design and overall results can be\u00a0 found\u00a0 in\u00a0 REUMA-VID\u2019s seminal article.<\/p>\n<h3><strong>Results<\/strong><\/h3>\n<p>The first phase of the REUMAVID survey involved\u00a0 1,800\u00a0 RMD\u00a0 patients,\u00a0 of\u00a0 whom 41.6%\u00a0 (748\/1,798)\u00a0 were\u00a0 member\u00a0 of\u00a0 POs (Fig. 1). During the first wave of the pandemic, among PO members, the proportion of\u00a0 those\u00a0 who\u00a0 reported\u00a0 receiving\u00a0 information\u00a0 on\u00a0 how\u00a0 COVID-19\u00a0 might\u00a0 affect\u00a0 their\u00a0 disease was high (73.1% vs. 40.5% of non-members), with POs being credited as the most\u00a0 common\u00a0 source\u00a0 of\u00a0 information\u00a0 for\u00a0 members (54.8%), followed by rheumatologists (28.8%), and GPs (14.3%). By contrast,\u00a0 among\u00a0 non-members,\u00a0 the\u00a0 most\u00a0 com-mon source of COVID-19 related information\u00a0 were\u00a0 rheumatologists\u00a0 (21.1%),\u00a0 followed by GPs (15.4%), and their Rheumatology Society (9.1%), and only 7.6% from POs. Compared to non-members, a higher proportion\u00a0 of\u00a0 members\u00a0 received\u00a0 disease-related\u00a0 information\u00a0 from\u00a0 POs\u00a0 (58.7% vs. 19.0% of non-member), help with managing their disease or lifestyle through advice or digital approaches (25.5% vs. 23.8% of non-member), as well as emotional or psychological support (21.6% vs. 9.5% of non-member; p=0.003). A higher proportion of PO members were able\u00a0 to\u00a0 consult\u00a0 with\u00a0 their\u00a0 rheumatologist\u00a0 on\u00a0 the\u00a0 possible\u00a0 effects\u00a0 that\u00a0 their\u00a0 medication could have on COVID-19 (70.9% vs. 58.5%\u00a0 of\u00a0 non-members, p=0.009). Compared\u00a0 to\u00a0 non-members,\u00a0 members\u00a0 reported\u00a0 slightly\u00a0 better\u00a0 (from\u00a0 good\u00a0 to\u00a0 very\u00a0 good) self-perceived\u00a0 health\u00a0 (40.2% vs.\u00a0 33.0% of\u00a0\u00a0 non-members,\u00a0\u00a0 p=0.017), lower disease activity (5.0 vs. 5.4 of non-members, p=0.005) measured by a Visual Analogue Scale (VAS), better well-being (42.5% vs. 53.7% of non-members, p&lt;0.001) measured by The WHO Five Well-Being Index (WHO-5), and lower risk of anxiety (54.5% vs. 59.2% of non-members, p=0.047) measured by the Hospital Anxiety and Depression Scale (HADs). Furthermore, a higher proportion of non-members gained weight (43.6% vs.\u00a0 37.0%, p=0.010).\u00a0 27.1% of members smoked more than before the COVID-19 pandemic (vs. 23.3% of non-members, p=0.305), while a higher proportion\u00a0\u00a0 of\u00a0\u00a0 non-members\u00a0\u00a0 increased\u00a0\u00a0 their\u00a0\u00a0 alcohol consumption (19.8% vs. 15.8% of members, p=0.246).<\/p>\n<h3><strong>Conclusion<\/strong><\/h3>\n<p>In conclusion, POs have played an important role in the healthcare ecosystem, filling the gap caused by the COVID-19 pandemic and related lockdowns. Members were better\u00a0 informed\u00a0 about\u00a0 the\u00a0 SARS-CoV-2\u00a0 and the\u00a0 possible\u00a0 effects\u00a0 on\u00a0 their\u00a0 disease,\u00a0 while\u00a0 more\u00a0 often\u00a0 receiving\u00a0 emotional\u00a0 support,\u00a0 reporting better connection with healthcare professionals,\u00a0 and\u00a0 better\u00a0 health\u00a0 status\u00a0 and\u00a0 outcomes\u00a0 during\u00a0 these\u00a0 difficult\u00a0 moments. As\u00a0 members\u00a0 of\u00a0 the\u00a0 extended\u00a0 healthcare team,\u00a0 POs\u00a0 provided\u00a0 critical\u00a0 information and\u00a0 access \u00a0to\u00a0 supportive\u00a0 resources\u00a0 to\u00a0 all\u00a0 RMD patients. Efforts should be made to better foster, formalise, and institutionalise collaboration between POs and healthcare systems, to improve patient care and quality of life for those affected with RMDs.<\/p>\n<h3><strong>Link to the article<\/strong><\/h3>\n<p><a href=\"https:\/\/pubmed.ncbi.nlm.nih.gov\/35084328\/\">https:\/\/pubmed.ncbi.nlm.nih.gov\/35084328\/<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Exploring the role of rheumatic and musculoskeletal disease patient organisations during the COVID-19 pandemic: results from the REUMAVID study (phase 1) Marco Garrido-Cumbrera, Helena Marzo-Ortega, Laura Christen, Jos\u00e9 Correa-Fern\u00e1ndez, Sergio Sanz-G\u00f3mez, Victoria Navarro-Comp\u00e1n, REUMAVID Working Group. Clin Exp Rheumatol. 2022. Objective This study aims to assess the role of RMD POs during the COVID-19 pandemic.&hellip;<\/p>\n","protected":false},"author":7,"featured_media":2393,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[54],"tags":[],"class_list":["post-2429","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-articles","category-54","description-off"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v26.1.1 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>Exploring the role of rheumatic and musculoskeletal disease patient organisations during the COVID-19 pandemic: results from the REUMAVID study (phase 1) - Health &amp; Territory Research<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/grupo.us.es\/healthterritory\/en\/exploring-the-role-of-rheumatic-and-musculoskeletal-disease-patient-organisations-during-the-covid-19-pandemic-results-from-the-reumavid-study-phase-1\/\" \/>\n<meta property=\"og:locale\" content=\"es_ES\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Exploring the role of rheumatic and musculoskeletal disease patient organisations during the COVID-19 pandemic: results from the REUMAVID study (phase 1) - Health &amp; Territory Research\" \/>\n<meta property=\"og:description\" content=\"Exploring the role of rheumatic and musculoskeletal disease patient organisations during the COVID-19 pandemic: results from the REUMAVID study (phase 1) Marco Garrido-Cumbrera, Helena Marzo-Ortega, Laura Christen, Jos\u00e9 Correa-Fern\u00e1ndez, Sergio Sanz-G\u00f3mez, Victoria Navarro-Comp\u00e1n, REUMAVID Working Group. Clin Exp Rheumatol. 2022. 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