{"id":389,"date":"2015-08-27T13:08:02","date_gmt":"2015-08-27T17:08:02","guid":{"rendered":"http:\/\/thehopenet.org\/blog\/?p=389"},"modified":"2015-08-27T13:08:02","modified_gmt":"2015-08-27T17:08:02","slug":"defining-the-treatment-gap-what-essential-tremor-patients-want-that-they-are-not-getting","status":"publish","type":"post","link":"https:\/\/thehopenet.org\/blog2\/defining-the-treatment-gap-what-essential-tremor-patients-want-that-they-are-not-getting\/","title":{"rendered":"Defining the Treatment Gap: What Essential Tremor Patients Want That They Are Not Getting"},"content":{"rendered":"

\"Puzzle<\/a>Abstract<\/strong><\/p>\n

Background:<\/strong> Patient-centeredness (i.e., providing care that is responsive to individual patient preferences) is increasingly recognized as a crucial element of quality of care.<\/p>\n

Methods:<\/strong> A six-item patient-centeredness questionnaire was devised to assess the self-perceived needs of essential tremor (ET) patients. A link to the questionnaire was included in the monthly e-newsletter of the International Essential Tremor Foundation. The questionnaires were completed online and data were available in electronic format.<\/p>\n

Results:<\/strong> There were 1,418 respondents. One in three respondents (i.e., 31.4%) indicated that the doctor was not even \u2018\u2018moderately well-educated\u2019\u2019 about ET. Only 11.8% of respondents were satisfied with their care. Respondents raised a multiplicity of issues that were not being addressed in their current care. The top items were psychological services and support (33.9%), physical or occupational therapy (28.6%), handling embarrassment and social effects of tremor (15.8%), feelings of not being in control (13.7%), a detailed report and a more quantitative way of assessing tremor and tracking progression (12.7%), better counseling about current treatment and medications (11.9%), empathy, compassion and a feeling of being heard (11.6%), a treatment approach other than just medications and surgery (11.2%), and a discussion of all symptoms aside from tremor (e.g., cognition, balance).<\/p>\n

Discussion:<\/strong> Patients with ET identified a broad range of issues that they felt were not addressed in their treatment; indeed, only one in 10 patients reported that they were satisfied with their care. It is hoped that patient-centered approaches such as this will lead to improved models for the care of patients with this common chronic disease.<\/p>\n

Elan D. Louis , 1,2,3* , Brittany Rohl 1 & Catherine Rice 4<\/p>\n

1 Department of Neurology, Yale School of Medicine, Yale University, New Haven, CT, USA, 2 Department of Chronic Disease Epidemiology, Yale School of Public Health, Yale University, New Haven, CT, USA, 3 Center for Neuroepidemiology and Clinical Neurological Research, Yale School of Medicine, Yale University, New Haven, CT, USA, 4 International Essential Tremor Foundation, Lenexa, KS, USA<\/p>\n

Defining the Treatment Gap in ET<\/a> full article (pdf)<\/p>\n","protected":false},"excerpt":{"rendered":"

Abstract Background: Patient-centeredness (i.e., providing care that is responsive to individual patient preferences) is increasingly recognized as a crucial element of quality of care. Methods: A six-item patient-centeredness questionnaire was devised to assess the self-perceived needs of essential tremor (ET) patients. A link to the questionnaire was included in the monthly e-newsletter of the International … Read more…<\/a><\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":[],"categories":[26],"tags":[],"yoast_head":"\nDefining the Treatment Gap: What Essential Tremor Patients Want That They Are Not Getting - HopeNet<\/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:\/\/thehopenet.org\/blog2\/defining-the-treatment-gap-what-essential-tremor-patients-want-that-they-are-not-getting\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Defining the Treatment Gap: What Essential Tremor Patients Want That They Are Not Getting - HopeNet\" \/>\n<meta property=\"og:description\" content=\"Abstract Background: Patient-centeredness (i.e., providing care that is responsive to individual patient preferences) is increasingly recognized as a crucial element of quality of care. Methods: A six-item patient-centeredness questionnaire was devised to assess the self-perceived needs of essential tremor (ET) patients. A link to the questionnaire was included in the monthly e-newsletter of the International ... Read more...\" \/>\n<meta property=\"og:url\" content=\"https:\/\/thehopenet.org\/blog2\/defining-the-treatment-gap-what-essential-tremor-patients-want-that-they-are-not-getting\/\" \/>\n<meta property=\"og:site_name\" content=\"HopeNet\" \/>\n<meta property=\"article:publisher\" content=\"https:\/\/www.facebook.com\/TheHopeNet\" \/>\n<meta property=\"article:published_time\" content=\"2015-08-27T17:08:02+00:00\" \/>\n<meta property=\"og:image\" content=\"http:\/\/thehopenet.org\/blog\/wp-content\/uploads\/2015\/08\/bridgegap-300x300.png\" \/>\n<meta name=\"twitter:label1\" content=\"Est. reading time\">\n\t<meta name=\"twitter:data1\" content=\"2 minutes\">\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\/\/schema.org\",\"@graph\":[{\"@type\":\"WebSite\",\"@id\":\"https:\/\/thehopenet.org\/blog2\/#website\",\"url\":\"https:\/\/thehopenet.org\/blog2\/\",\"name\":\"HopeNet\",\"description\":\"A guiding light for those affected by Essential Tremor\",\"potentialAction\":[{\"@type\":\"SearchAction\",\"target\":\"https:\/\/thehopenet.org\/blog2\/?s={search_term_string}\",\"query-input\":\"required name=search_term_string\"}],\"inLanguage\":\"en-US\"},{\"@type\":\"ImageObject\",\"@id\":\"https:\/\/thehopenet.org\/blog2\/defining-the-treatment-gap-what-essential-tremor-patients-want-that-they-are-not-getting\/#primaryimage\",\"inLanguage\":\"en-US\",\"url\":\"http:\/\/thehopenet.org\/blog\/wp-content\/uploads\/2015\/08\/bridgegap-300x300.png\",\"contentUrl\":\"http:\/\/thehopenet.org\/blog\/wp-content\/uploads\/2015\/08\/bridgegap-300x300.png\"},{\"@type\":\"WebPage\",\"@id\":\"https:\/\/thehopenet.org\/blog2\/defining-the-treatment-gap-what-essential-tremor-patients-want-that-they-are-not-getting\/#webpage\",\"url\":\"https:\/\/thehopenet.org\/blog2\/defining-the-treatment-gap-what-essential-tremor-patients-want-that-they-are-not-getting\/\",\"name\":\"Defining the Treatment Gap: What Essential Tremor Patients Want That They Are Not Getting - HopeNet\",\"isPartOf\":{\"@id\":\"https:\/\/thehopenet.org\/blog2\/#website\"},\"primaryImageOfPage\":{\"@id\":\"https:\/\/thehopenet.org\/blog2\/defining-the-treatment-gap-what-essential-tremor-patients-want-that-they-are-not-getting\/#primaryimage\"},\"datePublished\":\"2015-08-27T17:08:02+00:00\",\"dateModified\":\"2015-08-27T17:08:02+00:00\",\"author\":{\"@id\":\"https:\/\/thehopenet.org\/blog2\/#\/schema\/person\/8338336e37ab4f2c544dfd585aaf7a6d\"},\"breadcrumb\":{\"@id\":\"https:\/\/thehopenet.org\/blog2\/defining-the-treatment-gap-what-essential-tremor-patients-want-that-they-are-not-getting\/#breadcrumb\"},\"inLanguage\":\"en-US\",\"potentialAction\":[{\"@type\":\"ReadAction\",\"target\":[\"https:\/\/thehopenet.org\/blog2\/defining-the-treatment-gap-what-essential-tremor-patients-want-that-they-are-not-getting\/\"]}]},{\"@type\":\"BreadcrumbList\",\"@id\":\"https:\/\/thehopenet.org\/blog2\/defining-the-treatment-gap-what-essential-tremor-patients-want-that-they-are-not-getting\/#breadcrumb\",\"itemListElement\":[{\"@type\":\"ListItem\",\"position\":1,\"item\":{\"@type\":\"WebPage\",\"@id\":\"https:\/\/thehopenet.org\/blog2\/\",\"url\":\"https:\/\/thehopenet.org\/blog2\/\",\"name\":\"Home\"}},{\"@type\":\"ListItem\",\"position\":2,\"item\":{\"@type\":\"WebPage\",\"@id\":\"https:\/\/thehopenet.org\/blog2\/defining-the-treatment-gap-what-essential-tremor-patients-want-that-they-are-not-getting\/\",\"url\":\"https:\/\/thehopenet.org\/blog2\/defining-the-treatment-gap-what-essential-tremor-patients-want-that-they-are-not-getting\/\",\"name\":\"Defining the Treatment Gap: What Essential Tremor Patients Want That They Are Not Getting\"}}]},{\"@type\":\"Person\",\"@id\":\"https:\/\/thehopenet.org\/blog2\/#\/schema\/person\/8338336e37ab4f2c544dfd585aaf7a6d\",\"name\":\"HopeNetAdmin\"}]}<\/script>\n<!-- \/ Yoast SEO plugin. -->","_links":{"self":[{"href":"https:\/\/thehopenet.org\/blog2\/wp-json\/wp\/v2\/posts\/389"}],"collection":[{"href":"https:\/\/thehopenet.org\/blog2\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/thehopenet.org\/blog2\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/thehopenet.org\/blog2\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/thehopenet.org\/blog2\/wp-json\/wp\/v2\/comments?post=389"}],"version-history":[{"count":0,"href":"https:\/\/thehopenet.org\/blog2\/wp-json\/wp\/v2\/posts\/389\/revisions"}],"wp:attachment":[{"href":"https:\/\/thehopenet.org\/blog2\/wp-json\/wp\/v2\/media?parent=389"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/thehopenet.org\/blog2\/wp-json\/wp\/v2\/categories?post=389"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/thehopenet.org\/blog2\/wp-json\/wp\/v2\/tags?post=389"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}