{"id":1015,"date":"2017-10-24T09:00:28","date_gmt":"2017-10-24T13:00:28","guid":{"rendered":"https:\/\/elearning.wfh.org\/resource\/compendium-outils-evaluation\/"},"modified":"2022-09-21T15:49:00","modified_gmt":"2022-09-21T19:49:00","slug":"compendium-outils-evaluation","status":"publish","type":"resource","link":"https:\/\/elearning.wfh.org\/fr\/resource\/compendium-outils-evaluation\/","title":{"rendered":"Compendium d\u2019outils d\u2019\u00e9valuation"},"content":{"rendered":"<p class=\"\">L\u2019h\u00e9mophilie est une maladie rare et sa prise en charge requiert l&rsquo;intervention de plusieurs disciplines. Les progr\u00e8s en m\u00e9decine, y compris le remplacement prophylactique de facteur, font ressortir de plus en plus le besoin d\u2019avoir des outils d\u2019\u00e9valuation qui sont valables, fiables, sensibles au changement, et pr\u00e9dictifs. La condition physique (sant\u00e9 des articulations), les capacit\u00e9s fonctionnelles et la qualit\u00e9 de vie peuvent d\u00e9sormais \u00eatre mesur\u00e9es avec des outils normalis\u00e9s. Des bar\u00e8mes sont en voie d\u2019\u00eatre \u00e9tablis pour les ultrasons et l\u2019IRM.<\/p>\n<p class=\"\">Plusieurs de ces outils ont \u00e9t\u00e9 mis au point par des groupes de travail compos\u00e9s d\u2019experts internationaux, et ont \u00e9t\u00e9 test\u00e9s dans des milieux diff\u00e9rents.<\/p>\n<p class=\"\">Le but de ce compendium est de fournir aux intervenants et aux chercheurs en h\u00e9mophilie une revue des outils d\u2019\u00e9valuation nouveaux et existants pouvant \u00eatre utilis\u00e9s dans le contexte de l\u2019h\u00e9mophilie. L\u2019utilisation appropri\u00e9e de ces outils alimentera la recherche et informera les meilleures pratiques.<\/p>\n<div id=\"accordion\">\n<div class=\"card\">\n<div class=\"card-header\" id=\"headingOne\">\n<h5 class=\"mb-0\">\n        <button class=\"btn btn-link btn-acc\" data-toggle=\"collapse\" data-target=\"#collapseOne\" aria-expanded=\"true\" aria-controls=\"collapseOne\"><br \/>\nOutils d\u2019\u00e9valuation des capacit\u00e9s fonctionnelles et de la condition physique<br \/>\n<\/button><\/h5>\n<\/div>\n<div id=\"collapseOne\" class=\"collapse\" aria-labelledby=\"headingOne\" data-parent=\"#accordion\">\n<div class=\"card-body\">\n<p class=\"\">Chez les h\u00e9mophiles, les articulations font partie des sites de saignement les plus fr\u00e9quents. En cas de traitement inad\u00e9quat, les saignements \u00e0 r\u00e9p\u00e9tition provoqueront la d\u00e9t\u00e9rioration progressive des articulations et des muscles, une perte fonctionnelle importante caus\u00e9e par la perte de la mobilit\u00e9, une atrophie musculaire, des douleurs, des d\u00e9formations articulaires et des contractures. Il existe plusieurs scores relatifs \u00e0 l\u2019h\u00e9mophilie qui servent \u00e0 mesurer les d\u00e9ficiences et la capacit\u00e9 fonctionnelle des articulations, y compris leurs activit\u00e9s et leur participation.<\/p>\n<p class=\"\">Ces scores peuvent servir \u00e0 :<\/p>\n<ul style=\"margin-bottom: 1rem;\">\n<li>\u00e9valuer la sant\u00e9 des articulations afin d\u2019\u00e9tablir une mesure de r\u00e9f\u00e9rence et d\u00e9terminer le traitement ad\u00e9quat ;<\/li>\n<li>r\u00e9aliser une \u00e9valuation r\u00e9guli\u00e8re qui permet d\u2019effectuer une \u00e9valuation longitudinale de chaque patient et de \u00a0d\u00e9celer des probl\u00e8mes nouveaux ou possibles d\u00e8s les premi\u00e8res manifestations de la maladie ;<\/li>\n<li>\u00e9valuer les progr\u00e8s d\u2019un plan th\u00e9rapeutique.<\/li>\n<\/ul>\n<p class=\"\"><strong>Groupe de travail :<\/strong> Karen Beeton, Brian Feldman, Kathy Mulder, Pradeep Poonnoose, Janjaap Van der Net et\u00a0Nancy Young.<\/p>\n<p class=\"\"><em>Les descriptions d\u00e9taill\u00e9es des outils d\u2019\u00e9valuation sont uniquement disponibles en anglais.<\/em><\/p>\n<div class=\"row\">\n<div class=\"col-md-4\" style=\"background: #f7f7f7; border: 5px solid white;\">\n<h5 style=\"margin-bottom: 0.2rem;\"><a style=\"text-decoration: none;\" href=\"https:\/\/elearning.wfh.org\/fr\/resource\/score-relatif-lexamen-physique-de-la-fmh-score-de-gilbert\/\" target=\"_blank\" rel=\"noopener noreferrer\">Score relatif \u00e0 l\u2019examen physique de la FMH (\u00e9galement connu sous le nom de score de Gilbert)<\/a><\/h5>\n<p class=\"\">Ce score mesure les d\u00e9ficiences au niveau des articulations qui sont les plus couramment touch\u00e9es par les saignements chez les h\u00e9mophiles : genoux, chevilles et \u00e9paules. Il est principalement con\u00e7u pour les adultes et les enfants souffrant d\u2019une arthropathie \u00e9tablie.<\/p>\n<\/div>\n<div class=\"col-md-4\" style=\"background: #f7f7f7; border: 5px solid white;\">\n<h5 style=\"margin-bottom: 0.2rem;\"><a style=\"text-decoration: none;\" href=\"https:\/\/elearning.wfh.org\/fr\/resource\/hjhs-ou-score-relatif-la-sante-des-articulations-chez-les-hemophiles\/\" target=\"_blank\" rel=\"noopener noreferrer\">Hemophilia Joint Health Score (HJHS ou score relatif \u00e0 la sant\u00e9 des articulations chez les h\u00e9mophiles)<\/a><\/h5>\n<p class=\"\">Ce score sert \u00e9galement \u00e0 mesurer les d\u00e9ficiences au niveau des articulations. Il permet de surveiller l\u2019\u00e9volution des articulations au fil du temps ou d\u2019\u00e9valuer l\u2019efficacit\u00e9 des sch\u00e9mas th\u00e9rapeutiques chez les enfants recevant \u00e0 la fois un traitement prophylactique et un traitement ponctuel.<\/p>\n<\/div>\n<div class=\"col-md-4\" style=\"background: #f7f7f7; border: 5px solid white;\">\n<h5 style=\"margin-bottom: 0.2rem;\"><a style=\"text-decoration: none;\" href=\"https:\/\/elearning.wfh.org\/fr\/resource\/fish-ou-score-relatif-lautonomie-fonctionnelle-chez-les-hemophiles\/\" target=\"_blank\" rel=\"noopener noreferrer\">Functional Independence Score in Hemophilia (FISH ou score relatif \u00e0 l\u2019autonomie fonctionnelle chez les h\u00e9mophiles)<\/a><\/h5>\n<p class=\"\">\u00c9labor\u00e9 comme un outil d\u2019\u00e9valuation ax\u00e9 sur les r\u00e9sultats afin de mesurer en toute objectivit\u00e9 la capacit\u00e9 fonctionnelle d\u2019une personne ; ce score est cens\u00e9 \u00e9valuer ce que la personne handicap\u00e9e est v\u00e9ritablement en mesure de faire.<\/p>\n<\/div>\n<div class=\"col-md-4\" style=\"background: #f7f7f7; border: 5px solid white;\">\n<h5 style=\"margin-bottom: 0.2rem;\"><a style=\"text-decoration: none;\" href=\"https:\/\/elearning.wfh.org\/fr\/resource\/hal-ou-liste-dactivites-chez-les-hemophiles\/\" target=\"_blank\" rel=\"noopener noreferrer\">Haemophilia\u00a0Activities List (HAL ou liste d\u2019activit\u00e9s chez les h\u00e9mophiles)<\/a><\/h5>\n<p class=\"\">Ce score est con\u00e7u pour mesurer les effets de l\u2019h\u00e9mophilie sur les capacit\u00e9s fonctionnelles que l\u2019adulte per\u00e7oit.<\/p>\n<\/div>\n<div class=\"col-md-4\" style=\"background: #f7f7f7; border: 5px solid white;\">\n<h5 style=\"margin-bottom: 0.2rem;\"><a style=\"text-decoration: none;\" href=\"https:\/\/elearning.wfh.org\/fr\/resource\/pedhal-ou-version-pediatrique-de-la-liste-dactivites-chez-les-hemophiles\/\" target=\"_blank\" rel=\"noopener noreferrer\">Haemophilia Activities List \u2013 Pediatric (PedHAL ou version p\u00e9diatrique de la liste d\u2019activit\u00e9s chez les h\u00e9mophiles)<\/a><\/h5>\n<p class=\"\">La version p\u00e9diatrique de ce score doit \u00eatre choisie afin de mesurer les effets de l\u2019h\u00e9mophilie sur les capacit\u00e9s fonctionnelles que l\u2019enfant per\u00e7oit. La version actuelle \u00e9value les m\u00eames domaines que l\u2019HAL, qui sont au nombre de sept.<\/p>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n<p class=\"\">\n<\/div>\n<div class=\"card\">\n<div id=\"headingTwo\" class=\"card-header\">\n<h5 class=\"mb-0\"><button class=\"btn btn-link btn-acc collapsed\" data-toggle=\"collapse\" data-target=\"#collapseTwo\" aria-expanded=\"false\" aria-controls=\"collapseTwo\"><br \/>\nOutils d\u2019\u00e9valuation des saignements<br \/>\n<\/button><\/h5>\n<\/div>\n<div id=\"collapseTwo\" class=\"collapse\" aria-labelledby=\"headingTwo\" data-parent=\"#accordion\">\n<div class=\"card-body\">\n<p class=\"\">Il n\u2019est pas facile de poser un diagnostic en laboratoire des troubles de coagulation l\u00e9gers et rares. La transmission h\u00e9r\u00e9ditaire de bon nombre de ces troubles n\u2019\u00e9tant pas \u00e9vidente \u00e0 \u00e9tablir, on compte beaucoup sur les ant\u00e9c\u00e9dents h\u00e9morragiques, lesquels sont largement suggestifs.<\/p>\n<p class=\"\">Les scores quantitatifs normalis\u00e9s des sympt\u00f4mes h\u00e9morragiques rev\u00eatent une grande importance. Ils peuvent, en particulier, servir \u00e0 :<\/p>\n<ul style=\"margin-bottom: 1rem;\">\n<li>d\u00e9pister notamment les troubles l\u00e9gers de la coagulation ;<\/li>\n<li>\u00e9valuer la gravit\u00e9 de la maladie ;<\/li>\n<li>tenir compte de l\u2019h\u00e9t\u00e9rog\u00e9n\u00e9it\u00e9 ph\u00e9notypique et des corr\u00e9lations qui existent entre le ph\u00e9notype clinique et le ph\u00e9notype de laboratoire et entre le g\u00e9notype et le ph\u00e9notype ;<\/li>\n<li>am\u00e9liorer la communication en milieu clinique.<\/li>\n<\/ul>\n<p class=\"\">Au fil des ans, un certain nombre d\u2019outils ont \u00e9t\u00e9 mis au point afin de permettre de diagnostiquer les troubles de la coagulation ; certains \u00e0 caract\u00e8re g\u00e9n\u00e9ral et d\u2019autres en fonction des sympt\u00f4mes. Ce compendium fournit des \u00e9valuations des outils les plus utiles dans la pratique courante.<\/p>\n<p class=\"\"><strong>Groupe de travail :<\/strong> Christoph Bidlingmaier, Magdy El Ekiaby, Joan Gill, Paula James (pr\u00e9sidente), Sarah O\u2019Brien, Roberta Palla, Flora Peyvandi, Margaret Rand, Christine Sabapathy et\u00a0Alok Srivastava.<\/p>\n<p class=\"\"><em>Les descriptions d\u00e9taill\u00e9es des outils d\u2019\u00e9valuation sont uniquement disponibles en anglais.<\/em><\/p>\n<h3 style=\"margin-top: 2rem;\">Outils diagnostiques g\u00e9n\u00e9raux<\/h3>\n<div class=\"row\">\n<div class=\"col-md-4\" style=\"background: #f7f7f7; border: 5px solid white;\">\n<h5 style=\"margin-bottom: 0.2rem;\"><a style=\"text-decoration: none;\" href=\"https:\/\/elearning.wfh.org\/fr\/resource\/mcmdm-1-mw-condense\/\" target=\"_blank\" rel=\"noopener noreferrer\">MCMDM-1 mW condens\u00e9<\/a><\/h5>\n<p class=\"\">Ce questionnaire peut \u00eatre utilis\u00e9 dans le milieu clinique afin d\u2019exclure la maladie de von Willebrand (mW) ou de distinguer les types et la gravit\u00e9 de la mW chez les patients pr\u00e9c\u00e9demment diagnostiqu\u00e9s.<\/p>\n<\/div>\n<div class=\"col-md-4\" style=\"background: #f7f7f7; border: 5px solid white;\">\n<h5 style=\"margin-bottom: 0.2rem;\"><a style=\"text-decoration: none;\" href=\"https:\/\/elearning.wfh.org\/fr\/resource\/mcmdm-1-mw\/\" target=\"_blank\" rel=\"noopener noreferrer\">MCMDM-1 mW<\/a><\/h5>\n<p class=\"\">Ce questionnaire sert \u00e0 distinguer les types de la mW et \u00e0 \u00e9valuer le cycle et la gravit\u00e9 des saignements. \u00c9tant donn\u00e9 que ce questionnaire est long \u00e0 effectuer, il est principalement utilis\u00e9 en recherche.<\/p>\n<\/div>\n<div class=\"col-md-4\" style=\"background: #f7f7f7; border: 5px solid white;\">\n<h5 style=\"margin-bottom: 0.2rem;\"><a style=\"text-decoration: none;\" href=\"https:\/\/elearning.wfh.org\/fr\/resource\/outil-devaluation-des-saignements-de-listh\/\" target=\"_blank\" rel=\"noopener noreferrer\">Outil d\u2019\u00e9valuation des saignements de l\u2019ISTH<\/a><\/h5>\n<p class=\"\">Ce questionnaire cible les patients qui font, pour la premi\u00e8re fois, l\u2019objet d\u2019une \u00e9valuation pour d\u00e9pister un trouble de coagulation. Il est utilis\u00e9 chez les enfants et les adultes chez qui on soup\u00e7onne l\u2019existence d\u2019un trouble l\u00e9ger de la coagulation l\u00e9ger, tel que la mW ou une dysfonction plaquettaire.<\/p>\n<\/div>\n<div class=\"col-md-4\" style=\"background: #f7f7f7; border: 5px solid white;\">\n<h5 style=\"margin-bottom: 0.2rem;\"><a style=\"text-decoration: none;\" href=\"https:\/\/elearning.wfh.org\/fr\/resource\/questionnaire-sur-les-saignements-chez-les-enfants\/\" target=\"_blank\" rel=\"noopener noreferrer\">Questionnaire sur les saignements chez les enfants<\/a><\/h5>\n<p class=\"\">Bas\u00e9 sur le questionnaire MCMDM-1 mW, ce questionnaire \u00e9value les saignements chez les enfants et sert d\u2019outil de d\u00e9pistage de la mW.<\/p>\n<\/div>\n<div class=\"col-md-4\" style=\"background: #f7f7f7; border: 5px solid white;\">\n<h5 style=\"margin-bottom: 0.2rem;\"><a style=\"text-decoration: none;\" href=\"https:\/\/elearning.wfh.org\/fr\/resource\/score-relatif-aux-saignements-de-sramek\/\" target=\"_blank\" rel=\"noopener noreferrer\">Score relatif aux saignements de \u0160r\u00e1mek<\/a><\/h5>\n<p class=\"\">Il s\u2019agit d\u2019un questionnaire court visant \u00e0 faciliter le diagnostic clinique des troubles h\u00e9r\u00e9ditaires l\u00e9gers de la coagulation, tels que la mW et les d\u00e9ficiences rares en facteurs de coagulation.<\/p>\n<\/div>\n<\/div>\n<h3 style=\"margin-top: 2rem;\">Outils sp\u00e9cifiques aux sympt\u00f4mes<\/h3>\n<div class=\"row\">\n<div class=\"col-md-4\" style=\"background: #f7f7f7; border: 5px solid white;\">\n<h5 style=\"margin-bottom: 0.2rem;\"><a style=\"text-decoration: none;\" href=\"https:\/\/elearning.wfh.org\/fr\/resource\/systeme-devaluation-de-lepistaxis\/\" target=\"_blank\" rel=\"noopener noreferrer\">Syst\u00e8me d\u2019\u00e9valuation de l\u2019\u00e9pistaxis<\/a><\/h5>\n<p class=\"\">Cet outil sert \u00e0 \u00e9valuer la gravit\u00e9 de l\u2019\u00e9pistaxis et \u00e0 identifier les patients qui requi\u00e8rent une \u00e9valuation plus approfondie \u00e0 la recherche de l\u2019existence possible d\u2019un trouble de coagulation.<\/p>\n<\/div>\n<div class=\"col-md-4\" style=\"background: #f7f7f7; border: 5px solid white;\">\n<h5 style=\"margin-bottom: 0.2rem;\"><a style=\"text-decoration: none;\" href=\"https:\/\/elearning.wfh.org\/fr\/resource\/grille-devaluation-illustree-des-pertes-sanguines\/\" target=\"_blank\" rel=\"noopener noreferrer\">Grille d\u2019\u00e9valuation illustr\u00e9e des pertes sanguines<\/a><\/h5>\n<p class=\"\">Cet outil simple et illustr\u00e9 sert \u00e0 \u00e9valuer les pertes de sang associ\u00e9es aux menstruations \u00a0chez les femmes avec \u00a0m\u00e9norragie.<\/p>\n<\/div>\n<div class=\"col-md-4\" style=\"background: #f7f7f7; border: 5px solid white;\">\n<h5 style=\"margin-bottom: 0.2rem;\"><a style=\"text-decoration: none;\" href=\"https:\/\/elearning.wfh.org\/fr\/resource\/outil-devaluation-specifique-la-menorragie\/\" target=\"_blank\" rel=\"noopener noreferrer\">Outil d\u2019\u00e9valuation sp\u00e9cifique \u00e0 la m\u00e9norragie<\/a><\/h5>\n<p class=\"\">Cet outil rapide et facile \u00e0 utiliser permet d\u2019identifier les femmes souffrant de m\u00e9norragie inexpliqu\u00e9e qui requi\u00e8rent des examens de laboratoire plus approfondis.<\/p>\n<\/div>\n<\/div>\n<p class=\"\" style=\"margin-top: 2rem;\">Le groupe de travail sur les outils d\u2019\u00e9valuation des saignements de la FMH \u00e9value \u00e9galement un certain nombre d\u2019autres scores. <a href=\"https:\/\/www1.wfh.org\/docs\/en\/Resources\/Assessment_Tools_Other_Scores.pdf\" target=\"blank\" rel=\"noopener noreferrer\">Cliquez ici<\/a> <em>(en anglais uniquement)<\/em> pour en obtenir une br\u00e8ve description.<\/p>\n<\/div>\n<\/div>\n<p class=\"\">\n<\/div>\n<\/div>\n<h6 style=\"margin-top: 2rem;\"><em>Derni\u00e8re mise \u00e0 jour :\u00a0avril 2014<\/em><\/h6>\n<style>\n   .btn-acc {\n      background:#f7f7f7!important;\n      box-shadow: none!important;\n   }\n   .btn-acc:focus {\n      color: #0056b3!important;\n   }\n<\/style>\n<p><script>\ndocument.getElementsByClassName(\"elementor-element-df2f370\")[0].style.display = \"none\";\n<\/script><\/p>\n","protected":false},"featured_media":6818,"template":"","format":[3958],"old-keyword":[4774,4772,4775,4784,4778,4781,4399,4771,4776,4782,4780,4777,4783,4773,4779],"topic":[3994],"serie":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v23.4 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>Compendium d\u2019outils d\u2019\u00e9valuation - eLearning Platform<\/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:\/\/elearning.wfh.org\/fr\/resource\/compendium-outils-evaluation\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Compendium d\u2019outils d\u2019\u00e9valuation - eLearning Platform\" \/>\n<meta property=\"og:description\" content=\"L\u2019h\u00e9mophilie est une maladie rare et sa prise en charge requiert l&rsquo;intervention de plusieurs disciplines. Les progr\u00e8s en m\u00e9decine, y compris le remplacement prophylactique de facteur, font ressortir de plus en plus le besoin d\u2019avoir des outils d\u2019\u00e9valuation qui sont valables, fiables, sensibles au changement, et pr\u00e9dictifs. 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