{"id":12665,"date":"2022-01-18T12:19:04","date_gmt":"2022-01-18T11:19:04","guid":{"rendered":"https:\/\/www.kapcode.fr\/?p=12665"},"modified":"2023-01-13T18:47:30","modified_gmt":"2023-01-13T17:47:30","slug":"apresj20-covid-long","status":"publish","type":"post","link":"https:\/\/www.kapcode.fr\/en\/articles\/afterj20-covid-long\/","title":{"rendered":"1TP4After20: What do patients tell us about COVID Long?"},"content":{"rendered":"
\n\t\t\t\t\t\t
\n\t\t\t\t\t\t
\n\t\t\t\t\t
\n\t\t\t
\n\t\t\t\t\t\t
\n\t\t\t\t
\n\t\t\t\t\t\t\t\t\t

Long COVID corresponds to a persistence of symptoms after COVID-19 after several weeks. The term \"COVID long<\/strong> was born in the first place on social networks throughout the world and in several languages to testify and demonstrate a longer and more complex evolution of the disease than that described in the first reports from Wuhan. Several hashtags have been created on the internet: #covidpersistent<\/strong>, #LongCovid<\/strong> or even 1TP4AfterJ20<\/strong>which led to the creation of the French association \"Apr\u00e8s J20<\/a><\/strong>. This is the first syndrome defined directly by patients on social networks.<\/p>

This term, later taken up by the media and the scientific community, was the subject of a study of the pathology on the collaborative platform Epilogue<\/b>. Kap Code then studied the long COVID via testimonies of patients suffering from this syndrome on social networks, particularly around their care pathways and the difficulties encountered.<\/b><\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t

\n\t\t\t\t
\n\t\t\t\t\t\t\t\t\t

COVID long, the first syndrome defined directly by patients on social networks<\/h2>

This study covered the period from January 2020 to July 2021<\/strong>where nearly 130,000 messages related to COVID long have been published. These messages were extracted from 21 sources<\/strong> The analysis identified a number of French-speaking social networks (Twitter, Facebook) and discussion forums. The analysis identified 15,364 messages<\/strong> published by 6,494 patients or relatives of patients with long-standing COVID<\/strong>.<\/p>

In March 2020<\/strong>a first message identified evokes a form of \" COVID chronic \"<\/strong>. While one of the hashtags related to the long COVID # afterJ20 is used for the first time in April 2020<\/strong> The hashtag is a premise for a progressive increase in testimonies on this subject. The scope and impact of the hashtag is even more measurable on the Twitter and Facebook platforms with the creation of pages dedicated to COVID long<\/strong> <\/a>(#Apr\u00e8sJ20-Association Covid Long France<\/strong>). We can also note that this impact goes beyond the borders of the digital world, with in particular February 2021<\/strong> A motion for resolution for the recognition of COVID Long patients presented to the National Assembly.<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t

\n\t\t\t\t
\n\t\t\t\t\t\t\t\t\t

Difficulties encountered during the care process<\/h2>

The care pathway of patients with the long form of COVID-19, is essentially marked by the general practitioner who most often redirects them to other specialists (neurologist, pulmonologist, ...). Concerning symptoms, 1,599 messages express at least one of the main symptoms of long COVID: asthenia (41.2% of messages), dyspnea (14.7%) and anxiety (12.6%<\/strong>). Asthenia is central to this trio of symptoms. Long COVID is sometimes compared to myalgic encephalomyelitis (ME\/CFS).<\/p>

A specific analysis of 424 messages expressing at least one difficulty expressed by a long COVID patient was conducted to better understand their daily lives.<\/strong> Symptom management in relation to COVID Long is mentioned in 35.4% of the messages<\/strong>. They are described as varied, lasting several weeks or months and fluctuating over time with relapses. We also find, in 15.1% of messages a psychological impact generated by the management of the long COVID<\/strong>.<\/p>

Finally, many patients mention questioning their clinical reality or even attributing it to other causes such as stress. Indeed 13.7% of the messages, mention the non-recognition of the long COVID by medical staff, authorities and their relatives.<\/strong><\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t

\n\t\t\t\t
\n\t\t\t\t\t\t\t\t\t\t\t\t
\n\t\t\t\t\t\t\t\t\t\t\t\n\t\t\t\t\t\t\t\"COVID\t\t\t\t\t\t\t\t<\/a>\n\t\t\t\t\t\t\t\t\t\t\t
Long COVID - Difficulties encountered by patients with long COVID <\/figcaption>\n\t\t\t\t\t\t\t\t\t\t<\/figure>\n\t\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
\n\t\t\t\t
\n\t\t\t\t\t\t\t\t\t

The online exchange platforms are places of free expression and constitute significant real-life data<\/strong>. They make it possible to follow patients through their care pathway and determine the difficulties they may encounter. As this study shows, which also allowed us to trace the emergence of the long COVID, which was born of social networks but especially of the patients themselves<\/strong>.<\/p>

All the results of the analysis of the Twitter exchanges around the long COVID are available on the platform Epilogue<\/strong><\/a>.<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t

\n\t\t\t\t\t\t
\n\t\t\t\t\t
\n\t\t\t
\n\t\t\t\t\t\t
\n\t\t\t\t
\n\t\t\t\t\t\t\t\t\t
\n\t\t\t\t\t\n\t\t\t\t\t\t\n\t\t\t\t\t\t\n\t\t\t\t<\/path><\/svg>\t\t\t<\/span>\n\t\t\t\t\t\t\t\t\tSee the note<\/span>\n\t\t\t\t\t<\/span>\n\t\t\t\t\t<\/a>\n\t\t\t\t<\/div>\n\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
\n\t\t\t\t
\n\t\t\t\t\t\t\t\t\t
\n\t\t\t\t\t\n\t\t\t\t\t\t\n\t\t\t\t\t\t\n\t\t\t\t<\/path><\/svg>\t\t\t<\/span>\n\t\t\t\t\t\t\t\t\tSee the dashboard<\/span>\n\t\t\t\t\t<\/span>\n\t\t\t\t\t<\/a>\n\t\t\t\t<\/div>\n\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
\n\t\t\t\t
\n\t\t\t\t\t\t\t\t\t
\n\t\t\t\t\t\n\t\t\t\t\t\t\n\t\t\t\t\t\t\n\t\t\t\t<\/path><\/svg>\t\t\t<\/span>\n\t\t\t\t\t\t\t\t\tSee the scientific publication<\/span>\n\t\t\t\t\t<\/span>\n\t\t\t\t\t<\/a>\n\t\t\t\t<\/div>\n\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t<\/div>","protected":false},"excerpt":{"rendered":"

As part of the Epilogue project, Kap Code presents the experiences of patients with this syndrome in the results of its long COVID infodemiology study.<\/p>","protected":false},"author":12,"featured_media":12689,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"site-sidebar-layout":"default","site-content-layout":"default","ast-site-content-layout":"default","site-content-style":"default","site-sidebar-style":"default","ast-global-header-display":"","ast-banner-title-visibility":"","ast-main-header-display":"","ast-hfb-above-header-display":"","ast-hfb-below-header-display":"","ast-hfb-mobile-header-display":"","site-post-title":"","ast-breadcrumbs-content":"","ast-featured-img":"","footer-sml-layout":"","ast-disable-related-posts":"","theme-transparent-header-meta":"default","adv-header-id-meta":"","stick-header-meta":"default","header-above-stick-meta":"","header-main-stick-meta":"","header-below-stick-meta":"","astra-migrate-meta-layouts":"default","ast-page-background-enabled":"default","ast-page-background-meta":{"desktop":{"background-color":"","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"tablet":{"background-color":"","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"mobile":{"background-color":"","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""}},"ast-content-background-meta":{"desktop":{"background-color":"var(--ast-global-color-5)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"tablet":{"background-color":"var(--ast-global-color-5)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"mobile":{"background-color":"var(--ast-global-color-5)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""}},"footnotes":""},"categories":[12],"tags":[95,16,28,51,21,18],"class_list":["post-12665","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-detect","tag-analyse","tag-covid-19","tag-epilogue","tag-experience-patient","tag-reseaux-sociaux","tag-rwd"],"_links":{"self":[{"href":"https:\/\/www.kapcode.fr\/en\/wp-json\/wp\/v2\/posts\/12665","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.kapcode.fr\/en\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.kapcode.fr\/en\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.kapcode.fr\/en\/wp-json\/wp\/v2\/users\/12"}],"replies":[{"embeddable":true,"href":"https:\/\/www.kapcode.fr\/en\/wp-json\/wp\/v2\/comments?post=12665"}],"version-history":[{"count":9,"href":"https:\/\/www.kapcode.fr\/en\/wp-json\/wp\/v2\/posts\/12665\/revisions"}],"predecessor-version":[{"id":14668,"href":"https:\/\/www.kapcode.fr\/en\/wp-json\/wp\/v2\/posts\/12665\/revisions\/14668"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.kapcode.fr\/en\/wp-json\/wp\/v2\/media\/12689"}],"wp:attachment":[{"href":"https:\/\/www.kapcode.fr\/en\/wp-json\/wp\/v2\/media?parent=12665"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.kapcode.fr\/en\/wp-json\/wp\/v2\/categories?post=12665"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.kapcode.fr\/en\/wp-json\/wp\/v2\/tags?post=12665"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}