{"id":36413,"date":"2023-08-29T12:41:19","date_gmt":"2023-08-29T10:41:19","guid":{"rendered":"https:\/\/www.ipsen.com\/?p=36413"},"modified":"2023-11-30T07:45:33","modified_gmt":"2023-11-30T05:45:33","slug":"mieux-comprendre-les-impacts-de-la-fop-aupres-des-patients-et-de-leurs-familles-etude-the-burden-of-illness","status":"publish","type":"post","link":"https:\/\/www.ipsen.com\/fr\/actualites\/rare-diseases-fr\/mieux-comprendre-les-impacts-de-la-fop-aupres-des-patients-et-de-leurs-familles-etude-the-burden-of-illness\/","title":{"rendered":"Mieux comprendre les impacts de la FOP aupr\u00e8s des patients et de leurs familles \u2013 \u00e9tude The Burden of Illness"},"content":{"rendered":"\n

La fibrodysplasie ossifiante progressive (FOP) est une maladie g\u00e9n\u00e9tique ultra-rare caract\u00e9ris\u00e9e par une formation osseuse extra-squelettique dans les tissus mous, notamment les muscles, les tendons et les ligaments, qui provoque une perte de mobilit\u00e9 irr\u00e9versible et progressive entra\u00eenant un handicap s\u00e9v\u00e8re. Malgr\u00e9 le bouleversement que repr\u00e9sente la maladie, il existe peu de donn\u00e9es concernant ses r\u00e9percussions sociales, \u00e9conomiques et en termes de qualit\u00e9 de vie sur les patients et leur famille.<\/p>\n\n\n\n

Afin d’y rem\u00e9dier, nous avons collabor\u00e9 avec l’International Fibrodysplasia Ossificans Progressiva Association (IFOPA) et 14 associations nationales de patients atteints de FOP pour co-cr\u00e9er la toute premi\u00e8re enqu\u00eate \u00e9valuant l’impact de la FOP sur les personnes atteintes de la maladie et leurs familles. Traduite dans 11 langues et accessible dans 15 pays, l’enqu\u00eate consistait \u00e0 \u00e9valuer la sant\u00e9 physique et mentale ainsi que le bien-\u00eatre \u00e9motionnel et social des participants.<\/p>\n\n\n\n

En travaillant directement avec la communaut\u00e9 FOP, nous nous sommes assur\u00e9s de poser les bonnes questions pour obtenir des r\u00e9ponses qui nous aideraient v\u00e9ritablement \u00e0 comprendre le v\u00e9cu des personnes atteintes de cette maladie.<\/p>\n\n\n\n

Au total, 463 personnes ont r\u00e9pondu \u00e0 l’enqu\u00eate, dont 219 personnes atteintes de FOP et 244 membres des familles de patients. Les r\u00e9sultats ont r\u00e9v\u00e9l\u00e9 que plus la maladie progresse, plus l’impact sur la qualit\u00e9 de vie est important. Ces d\u00e9couvertes nous ont permis de donner une voix aux patients et \u00e0 leurs familles pour d\u00e9crire l’impact v\u00e9ritable de cette maladie, afin de concevoir des essais cliniques qui tiendront compte des aspects de la maladie les plus impactants et pertinents, et d’identifier des solutions pour am\u00e9liorer leurs soins. Les r\u00e9sultats de l’\u00e9tude ont \u00e9t\u00e9 publi\u00e9s dans l’Expert Review of Pharmacoeconomics & Outcomes Research en septembre 2022, accompagn\u00e9s d’un r\u00e9sum\u00e9 vulgaris\u00e9<\/a>.<\/p>\n\n\n\n

Les r\u00e9sultats de cette enqu\u00eate pionni\u00e8re contribuent \u00e0 sensibiliser le plus grand nombre sur la FOP et \u00e0 mieux informer les professionnels de sant\u00e9 et les instances d\u00e9cisionnelles sur les d\u00e9fis auxquels sont confront\u00e9s les patients et leurs familles.<\/p>\n\n\n\n

\u00ab Pour la premi\u00e8re fois, nous disposons de donn\u00e9es factuelles qui d\u00e9montrent clairement l\u2019impact de la FOP sur tant d\u2019aspects de la vie quotidienne, \u00bb <\/em>a comment\u00e9 Megan Olsen, Pr\u00e9sidente du Conseil d\u2019administration de l\u2019IFOPA. \u00ab Ces informations sont essentielles pour identifier les besoins non satisfaits, am\u00e9liorer les soins des patients, \u00e9valuer les b\u00e9n\u00e9fices des nouvelles pratiques de soins de sant\u00e9 et renforcer le soutien apport\u00e9 \u00e0 la communaut\u00e9 FOP. Nous esp\u00e9rons que ces donn\u00e9es contribueront \u00e0 sensibiliser le plus grand nombre \u00e0 cette maladie ultra-rare et \u00e0 \u00e9duquer davantage les professionnels de sant\u00e9 comme les d\u00e9cideurs politiques sur les d\u00e9fis auxquels font face les patients vivant avec la FOP. <\/em>\u00bb<\/p>\n\n\n\n

Le mieux que nous pouvons faire pour comprendre les r\u00e9alit\u00e9s du quotidien avec une maladie rare, comme la FOP, est d’\u00e9couter avec attention le r\u00e9cit des patients sur la fa\u00e7on dont elle impacte tous les aspects de leur vie. En veillant \u00e0 ce que leurs observations soient int\u00e9gr\u00e9es tout au long du processus de d\u00e9veloppement clinique, y compris lors de la diffusion des conclusions, nous pouvons utiliser les r\u00e9sultats de ces recherches pour apporter des am\u00e9liorations concr\u00e8tes.<\/p>\n","protected":false},"excerpt":{"rendered":"

La fibrodysplasie ossifiante progressive (FOP) est une maladie g\u00e9n\u00e9tique ultra-rare caract\u00e9ris\u00e9e par une formation osseuse extra-squelettique dans les tissus mous,<\/p>\n","protected":false},"author":11,"featured_media":36676,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_jetpack_memberships_contains_paid_content":false,"footnotes":""},"categories":[1192],"tags":[],"class_list":["post-36413","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-rare-diseases-fr","entry"],"acf":[],"yoast_head":"\nMieux comprendre les impacts de la FOP aupr\u00e8s des patients et de leurs familles \u2013 \u00e9tude The Burden of Illness - Global<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" 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