{"id":1549,"date":"2016-09-24T22:18:03","date_gmt":"2016-09-24T22:18:03","guid":{"rendered":"http:\/\/cpcore.ca\/?page_id=1549"},"modified":"2022-12-23T15:35:38","modified_gmt":"2022-12-23T15:35:38","slug":"framework-of-patient-priorities","status":"publish","type":"page","link":"https:\/\/lab.research.sickkids.ca\/pscoreprogram\/framework-of-patient-priorities\/","title":{"rendered":"PSCORE Research Program"},"content":{"rendered":"<div class=\"fusion-fullwidth fullwidth-box fusion-builder-row-1 hundred-percent-fullwidth non-hundred-percent-height-scrolling\" style=\"--awb-border-radius-top-left:0px;--awb-border-radius-top-right:0px;--awb-border-radius-bottom-right:0px;--awb-border-radius-bottom-left:0px;--awb-overflow:visible;--awb-flex-wrap:wrap;\" ><div class=\"fusion-builder-row fusion-row\"><div class=\"fusion-layout-column fusion_builder_column fusion-builder-column-0 fusion_builder_column_1_4 1_4 fusion-one-fourth fusion-column-first\" style=\"--awb-bg-size:cover;width:22%; margin-right: 4%;\"><div class=\"fusion-column-wrapper fusion-flex-column-wrapper-legacy\"><div class=\"fusion-widget-area awb-widget-area-element fusion-widget-area-1 fusion-content-widget-area\" style=\"--awb-title-size:18px;--awb-title-color:#333333;--awb-padding:0px 0px 0px 0px;\"><div id=\"nav_menu-7\" class=\"widget widget_nav_menu\"><div class=\"heading\"><h4 class=\"widget-title\">About<\/h4><\/div><div class=\"menu-about-container\"><ul id=\"menu-about\" class=\"menu\"><li id=\"menu-item-1801\" class=\"menu-item menu-item-type-post_type menu-item-object-page menu-item-1801\"><a href=\"https:\/\/lab.research.sickkids.ca\/pscoreprogram\/framework-of-patient-priorities\/\">PSCORE Research Program<\/a><\/li>\n<li id=\"menu-item-2782\" class=\"menu-item menu-item-type-post_type menu-item-object-page menu-item-2782\"><a href=\"https:\/\/lab.research.sickkids.ca\/pscoreprogram\/team-trainees\/\">Team &amp; Trainees<\/a><\/li>\n<li id=\"menu-item-1799\" class=\"menu-item menu-item-type-post_type menu-item-object-page menu-item-1799\"><a href=\"https:\/\/lab.research.sickkids.ca\/pscoreprogram\/get-involved\/\">Get Involved<\/a><\/li>\n<\/ul><\/div><\/div><div class=\"fusion-additional-widget-content\"><\/div><\/div><div class=\"fusion-clearfix\"><\/div><\/div><\/div><div class=\"fusion-layout-column fusion_builder_column fusion-builder-column-1 fusion_builder_column_3_4 3_4 fusion-three-fourth fusion-column-last\" style=\"--awb-bg-size:cover;width:74%;\"><div class=\"fusion-column-wrapper fusion-flex-column-wrapper-legacy\"><div class=\"fusion-title title fusion-title-1 fusion-sep-none fusion-title-text fusion-title-size-one\" style=\"--awb-sep-color:#84d6e8;--awb-font-size:25px;\"><h1 class=\"fusion-title-heading title-heading-left fusion-responsive-typography-calculated\" style=\"margin:0;font-size:1em;--fontSize:25;line-height:1.79;\"><span style=\"color: #00afd8\">PSCORE Research Program<\/span><\/h1><\/div><div class=\"fusion-reading-box-container reading-box-container-1\" style=\"--awb-title-color:#333333;--awb-margin-top:0px;--awb-margin-bottom:50px;\"><div class=\"reading-box\" style=\"background-color:#f6f6f6;border-width:1px;border-color:#f6f6f6;border-left-width:3px;border-left-color:var(--primary_color);border-style:solid;\"><div class=\"reading-box-additional\">\n<h2>Our\u00a0research program aims to:<\/h2>\n<ol>\n<li>Understand <strong><em>priorities<\/em><\/strong> of patients and parents, explore their role in <strong><em>goal<\/em><\/strong> setting and clinical decision making;<\/li>\n<li>Incorporate these priorities and goals in the development and validation of meaningful <strong><em>patient reported outcome measures<\/em><\/strong> for musculoskeletal conditions; and<\/li>\n<li>Apply these outcome measures in <strong><em>clinical trials and cohort studies<\/em><\/strong> to evaluate the effectiveness of interventions for these conditions.<\/li>\n<\/ol>\n<\/div><div class=\"fusion-clearfix\"><\/div><\/div><\/div><div class=\"fusion-text fusion-text-1\"><h2 style=\"--fontSize: 28;line-height: 1.29\" data-fontsize=\"28\" data-lineheight=\"36.1167px\" class=\"fusion-responsive-typography-calculated\">1. Understand patient priorities<\/h2>\n<p>Our work has led to the development of a Framework of Patient Priorities (Figure 1) that links the concepts of <strong><em>priorities<\/em><\/strong> (concerns, desires and expectations) and goals that arise from the patient&#8217;s lived experiences, with <strong><em>interventions<\/em><\/strong> to address these priorities and goals, and <strong><em>outcome measures<\/em><\/strong> that evaluate the effectiveness of these interventions to specifically the goals for which they were intended.<\/p>\n<p>We have used this framework to define the priorities of patients with adolescent idiopathic scoliosis; and chronic neurologic conditions such as cerebral palsy (both ambulatory and non-ambulatory) and muscular dystrophy; congenital, developmental and acquired lower limb deformities; and skeletal trauma.<\/p>\n<\/div><div class=\"fusion-image-element fusion-image-align-center in-legacy-container\" style=\"text-align:center;--awb-margin-top:0px;--awb-margin-right:140px;--awb-margin-bottom:0px;--awb-margin-left:140px;--awb-caption-title-font-family:var(--h2_typography-font-family);--awb-caption-title-font-weight:var(--h2_typography-font-weight);--awb-caption-title-font-style:var(--h2_typography-font-style);--awb-caption-title-size:var(--h2_typography-font-size);--awb-caption-title-transform:var(--h2_typography-text-transform);--awb-caption-title-line-height:var(--h2_typography-line-height);--awb-caption-title-letter-spacing:var(--h2_typography-letter-spacing);\"><div class=\"imageframe-align-center\"><span class=\" fusion-imageframe imageframe-none imageframe-1 hover-type-none\"><a href=\"https:\/\/lab.research.sickkids.ca\/pscoreprogram\/wp-content\/uploads\/sites\/72\/2016\/09\/Patient-Priority-Framework-300x225.png\" class=\"fusion-lightbox\" data-rel=\"iLightbox[0fd78b6a3c3b8ce865e]\" data-title=\"Patient Priority Framework\" title=\"Patient Priority Framework\"><img decoding=\"async\" width=\"500\" height=\"375\" alt=\"Framework of patient priorities\" src=\"https:\/\/lab.research.sickkids.ca\/pscoreprogram\/wp-content\/uploads\/sites\/72\/2016\/09\/Patient-Priority-Framework-e1539704475561.png\" class=\"img-responsive wp-image-1852\"\/><\/a><\/span><\/div><\/div><div class=\"fusion-text fusion-text-2\"><h4>Fig 1. Framework of patient priorities<\/h4>\n<\/div><div class=\"fusion-text fusion-text-3\"><h2 style=\"--fontSize: 28;line-height: 1.29\" data-fontsize=\"28\" data-lineheight=\"36.1167px\" class=\"fusion-responsive-typography-calculated\"><strong><br \/>\n<\/strong>2. Development and validation of patient-reported outcome measures<\/h2>\n<p>We have completed or are continuing work on the development and validation of several patient and parent-reported outcome measures that explicitly incorporate the priorities and goals of families that arise from their experience living with a chronic condition. Validated outcome measures include the <em><strong>CPCHILD&#x2122;<\/strong><\/em>, <em><strong>GOAL&#x2122;<\/strong><\/em> and <em><strong>GOAL-LD&#x2122;<\/strong><\/em>. Outcome measures currently under development include the <em><strong>Muscular Dystrophy Child Health Index of Life with a Disability (MDCHILD&#x2122;)<\/strong><\/em>, a new outcome measure for children with progressive neuromuscular conditions such as Duchene\u2019s Muscular Dystrophy, and the <em><strong>Patient Reported Outcome Measure for Fractures (PROOF&#x2122;)<\/strong><\/em>, a tool for evaluating outcomes of upper and lower extremity fractures in children. To learn more, please visit the <span style=\"color: #00afd8\"><a style=\"color: #00afd8\" href=\"https:\/\/lab.research.sickkids.ca\/pscoreprogram\/cpchild\/\">Outcome Measures<\/a><\/span> page.<\/p>\n<h2 style=\"--fontSize: 28;line-height: 1.29\" data-fontsize=\"28\" data-lineheight=\"36.1167px\" class=\"fusion-responsive-typography-calculated\">3. Evaluation of clinical interventions through clinical trials and cohort studies<\/h2>\n<p>Children with chronic disability can undergo major health interventions to improve their mobility, comfort or quality of life. Many of these interventions are resource-intensive and expensive. It is our aim to understand the benefit of different interventions using outcome measures that are developed specifically for children with chronic conditions. To learn more, please visit the <span style=\"color: #00afd8\"><a style=\"color: #00afd8\" href=\"https:\/\/lab.research.sickkids.ca\/pscoreprogram\/cp-hip-outcomes-project\/\">Projects<\/a><\/span> page.<\/p>\n<\/div><div class=\"fusion-clearfix\"><\/div><\/div><\/div><\/div><\/div>\n","protected":false},"excerpt":{"rendered":"","protected":false},"author":1,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"footnotes":""},"class_list":["post-1549","page","type-page","status-publish","hentry"],"yoast_head":"<!-- This site is optimized with the Yoast SEO Premium plugin v27.0 (Yoast SEO v27.0) - https:\/\/yoast.com\/product\/yoast-seo-premium-wordpress\/ -->\n<title>PSCORE Research Program - PSCORE<\/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:\/\/lab.research.sickkids.ca\/pscoreprogram\/framework-of-patient-priorities\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"PSCORE Research Program\" \/>\n<meta property=\"og:url\" content=\"https:\/\/lab.research.sickkids.ca\/pscoreprogram\/framework-of-patient-priorities\/\" \/>\n<meta property=\"og:site_name\" content=\"PSCORE\" \/>\n<meta property=\"article:modified_time\" content=\"2022-12-23T15:35:38+00:00\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:label1\" content=\"Est. reading time\" \/>\n\t<meta name=\"twitter:data1\" content=\"4 minutes\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\/\/schema.org\",\"@graph\":[{\"@type\":\"WebPage\",\"@id\":\"https:\/\/lab.research.sickkids.ca\/pscoreprogram\/framework-of-patient-priorities\/\",\"url\":\"https:\/\/lab.research.sickkids.ca\/pscoreprogram\/framework-of-patient-priorities\/\",\"name\":\"PSCORE Research Program - PSCORE\",\"isPartOf\":{\"@id\":\"https:\/\/lab.research.sickkids.ca\/pscoreprogram\/#website\"},\"datePublished\":\"2016-09-24T22:18:03+00:00\",\"dateModified\":\"2022-12-23T15:35:38+00:00\",\"breadcrumb\":{\"@id\":\"https:\/\/lab.research.sickkids.ca\/pscoreprogram\/framework-of-patient-priorities\/#breadcrumb\"},\"inLanguage\":\"en-US\",\"potentialAction\":[{\"@type\":\"ReadAction\",\"target\":[\"https:\/\/lab.research.sickkids.ca\/pscoreprogram\/framework-of-patient-priorities\/\"]}]},{\"@type\":\"BreadcrumbList\",\"@id\":\"https:\/\/lab.research.sickkids.ca\/pscoreprogram\/framework-of-patient-priorities\/#breadcrumb\",\"itemListElement\":[{\"@type\":\"ListItem\",\"position\":1,\"name\":\"Home\",\"item\":\"https:\/\/lab.research.sickkids.ca\/pscoreprogram\/\"},{\"@type\":\"ListItem\",\"position\":2,\"name\":\"PSCORE Research Program\"}]},{\"@type\":\"WebSite\",\"@id\":\"https:\/\/lab.research.sickkids.ca\/pscoreprogram\/#website\",\"url\":\"https:\/\/lab.research.sickkids.ca\/pscoreprogram\/\",\"name\":\"PSCORE\",\"description\":\"Priority-Based Scales for Children\u2019s Outcomes Research &amp; Evaluation (PSCORE) Program\",\"potentialAction\":[{\"@type\":\"SearchAction\",\"target\":{\"@type\":\"EntryPoint\",\"urlTemplate\":\"https:\/\/lab.research.sickkids.ca\/pscoreprogram\/?s={search_term_string}\"},\"query-input\":{\"@type\":\"PropertyValueSpecification\",\"valueRequired\":true,\"valueName\":\"search_term_string\"}}],\"inLanguage\":\"en-US\"}]}<\/script>\n<!-- \/ Yoast SEO Premium plugin. -->","yoast_head_json":{"title":"PSCORE Research Program - PSCORE","robots":{"index":"index","follow":"follow","max-snippet":"max-snippet:-1","max-image-preview":"max-image-preview:large","max-video-preview":"max-video-preview:-1"},"canonical":"https:\/\/lab.research.sickkids.ca\/pscoreprogram\/framework-of-patient-priorities\/","og_locale":"en_US","og_type":"article","og_title":"PSCORE Research Program","og_url":"https:\/\/lab.research.sickkids.ca\/pscoreprogram\/framework-of-patient-priorities\/","og_site_name":"PSCORE","article_modified_time":"2022-12-23T15:35:38+00:00","twitter_card":"summary_large_image","twitter_misc":{"Est. reading time":"4 minutes"},"schema":{"@context":"https:\/\/schema.org","@graph":[{"@type":"WebPage","@id":"https:\/\/lab.research.sickkids.ca\/pscoreprogram\/framework-of-patient-priorities\/","url":"https:\/\/lab.research.sickkids.ca\/pscoreprogram\/framework-of-patient-priorities\/","name":"PSCORE Research Program - PSCORE","isPartOf":{"@id":"https:\/\/lab.research.sickkids.ca\/pscoreprogram\/#website"},"datePublished":"2016-09-24T22:18:03+00:00","dateModified":"2022-12-23T15:35:38+00:00","breadcrumb":{"@id":"https:\/\/lab.research.sickkids.ca\/pscoreprogram\/framework-of-patient-priorities\/#breadcrumb"},"inLanguage":"en-US","potentialAction":[{"@type":"ReadAction","target":["https:\/\/lab.research.sickkids.ca\/pscoreprogram\/framework-of-patient-priorities\/"]}]},{"@type":"BreadcrumbList","@id":"https:\/\/lab.research.sickkids.ca\/pscoreprogram\/framework-of-patient-priorities\/#breadcrumb","itemListElement":[{"@type":"ListItem","position":1,"name":"Home","item":"https:\/\/lab.research.sickkids.ca\/pscoreprogram\/"},{"@type":"ListItem","position":2,"name":"PSCORE Research Program"}]},{"@type":"WebSite","@id":"https:\/\/lab.research.sickkids.ca\/pscoreprogram\/#website","url":"https:\/\/lab.research.sickkids.ca\/pscoreprogram\/","name":"PSCORE","description":"Priority-Based Scales for Children\u2019s Outcomes Research &amp; Evaluation (PSCORE) Program","potentialAction":[{"@type":"SearchAction","target":{"@type":"EntryPoint","urlTemplate":"https:\/\/lab.research.sickkids.ca\/pscoreprogram\/?s={search_term_string}"},"query-input":{"@type":"PropertyValueSpecification","valueRequired":true,"valueName":"search_term_string"}}],"inLanguage":"en-US"}]}},"_links":{"self":[{"href":"https:\/\/lab.research.sickkids.ca\/pscoreprogram\/wp-json\/wp\/v2\/pages\/1549","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/lab.research.sickkids.ca\/pscoreprogram\/wp-json\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/lab.research.sickkids.ca\/pscoreprogram\/wp-json\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/lab.research.sickkids.ca\/pscoreprogram\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/lab.research.sickkids.ca\/pscoreprogram\/wp-json\/wp\/v2\/comments?post=1549"}],"version-history":[{"count":13,"href":"https:\/\/lab.research.sickkids.ca\/pscoreprogram\/wp-json\/wp\/v2\/pages\/1549\/revisions"}],"predecessor-version":[{"id":2939,"href":"https:\/\/lab.research.sickkids.ca\/pscoreprogram\/wp-json\/wp\/v2\/pages\/1549\/revisions\/2939"}],"wp:attachment":[{"href":"https:\/\/lab.research.sickkids.ca\/pscoreprogram\/wp-json\/wp\/v2\/media?parent=1549"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}