{"id":173,"date":"2018-10-12T13:06:02","date_gmt":"2018-10-12T12:06:02","guid":{"rendered":"https:\/\/research.reading.ac.uk\/neurodegenerative-diseases\/?page_id=173"},"modified":"2021-01-04T10:22:52","modified_gmt":"2021-01-04T10:22:52","slug":"hdqol","status":"publish","type":"page","link":"https:\/\/research.reading.ac.uk\/neurodegenerative-diseases\/hdqol\/","title":{"rendered":"Huntington&#8217;s disease health-related quality of life questionnaire (HDQoL)"},"content":{"rendered":"<div id='gallery-1' class='gallery galleryid-173 gallery-columns-2 gallery-size-full'><figure class='gallery-item'>\n\t\t\t<div class='gallery-icon landscape'>\n\t\t\t\t<img loading=\"lazy\" decoding=\"async\" width=\"150\" height=\"73\" src=\"https:\/\/research.reading.ac.uk\/neurodegenerative-diseases\/wp-content\/uploads\/sites\/65\/2021\/01\/hdqol-logo-resize.png\" class=\"attachment-full size-full\" alt=\"\" \/>\n\t\t\t<\/div><\/figure><figure class='gallery-item'>\n\t\t\t<div class='gallery-icon landscape'>\n\t\t\t\t<img loading=\"lazy\" decoding=\"async\" width=\"267\" height=\"73\" src=\"https:\/\/research.reading.ac.uk\/neurodegenerative-diseases\/wp-content\/uploads\/sites\/65\/2021\/01\/EHDN-block-300dpi-300x82-1.jpg\" class=\"attachment-full size-full\" alt=\"\" \/>\n\t\t\t<\/div><\/figure>\n\t\t<\/div>\n\n<p><strong>What is the HDQoL<sup>\u00a9 <\/sup>?<\/strong><\/p>\n<p>The Huntington&#8217;s Disease health-related Quality of Life questionnaire (HDQoL<sup>\u00a9<\/sup>) is a standardised instrument for measuring health-related quality of life. It is a validated disease-specific measure designed for Huntington&#8217;s disease. The HDQoL<sup>\u00a9 <\/sup>can provide a summary score of overall health-related quality of life, as well as scores on several discrete scales.<\/p>\n<p>The HDQoL<sup>\u00a9<\/sup>\u00a0is an initiative of the Quality of Life Working Group of the European Huntington&#8217;s Disease Network (EHDN). This international project is funded by the EHDN, led by <strong><a href=\"https:\/\/research.reading.ac.uk\/neurodegenerative-diseases\/dr-aileen-k-ho\/\">Dr Aileen Ho<\/a> <\/strong>as Principal Investigator, and based at the University of Reading, U.K.<\/p>\n<p><strong>Who is the HDQoL<sup>\u00a9 <\/sup>for?<\/strong><\/p>\n<p>The HDQoL<sup>\u00a9<\/sup>\u00a0is for people who are living with Huntington&#8217;s disease. This includes people who are at risk for Huntington&#8217;s, people who have tested positive for the Huntington&#8217;s gene but do not have symptoms,and also for people at early through to late stages of disease. The HDQoL<sup>\u00a9<\/sup>\u00a0can be used across the full spectrum of Huntington&#8217;s disease.<\/p>\n<p><strong>When can the HDQoL<sup>\u00a9\u00a0<\/sup>be used?<\/strong><\/p>\n<p>The HDQoL<sup>\u00a9<\/sup>\u00a0can be used when a measure of health-related quality of life is needed from people with Huntington&#8217;s disease. This could be for clinical or research purposes such as for clinical trials, intervention studies etc. It is also suitable for use for patient care and management.<\/p>\n<p><strong>Why use the HDQoL<sup>\u00a9\u00a0<\/sup>?<\/strong><\/p>\n<p>It is a reliable and valid instrument that is relevant to people living with Huntington&#8217;s disease.<\/p>\n<p>It was created to cater for Huntington\u2019s disease in particular, and is the product of extensive interviews with people living with Huntington&#8217;s disease.<\/p>\n<p>Most people complete the HDQoL<sup>\u00a9<\/sup>\u00a0in approximately 20 minutes, or often less time, and are happy to do it again in the future as they feel that it captures their experience of living with Huntington&#8217;s disease well.<\/p>\n<p>The HDQoL<sup>\u00a9<\/sup>\u00a0is the measure of quality of life recommended by the multi-national NINDS Common Data Elements project for Huntington&#8217;s disease.<\/p>\n<p>In a review commissioned by the International Movement Disorders Society&#8217;s Committee on Rating Scale Development, the HDQoL<sup>\u00a9<\/sup> was the foremost instrument amongst HD specific questionnaires as the only fully suggested scale.<\/p>\n<p>The HDQoL<sup>\u00a9 <\/sup>comes with a parallel carer\/partner version<\/p>\n<p>The HDQoL<sup>\u00a9 <\/sup>is available in multiple languages<\/p>\n<p>The HDQoL<sup>\u00a9<\/sup>\u00a0is used in on-going clinical, research and care work.<\/p>\n<p>The HDQoL<sup>\u00a9<\/sup>\u00a0is free to use, please contact us for enquiries: <strong><a href=\"mailto:webmaster@hdqol.info\">webmaster@hdqol.info<\/a><\/strong><\/p>\n<p><span style=\"color: #0000ff;\"><strong>Publications<\/strong><\/span><\/p>\n<p><strong>Ho AK<\/strong>,\u00a0Horton, M.C., Landwehrmeyer, G.B., Burgunder, J.M. and Tennant, A. (2019). <a href=\"http:\/\/centaur.reading.ac.uk\/81950\/\"><strong>Meaningful and measurable health domains in Huntington\u2019s: large-scale validation of the Huntington\u2019s disease health-related quality of life questionnaire (HDQoL) across severity stages<\/strong><\/a>. Value in Health,\u00a0<i>22<\/i>(6), pp.712-720.<\/p>\n<p>Mestre TA, Carlozzi NE, <strong>Ho AK<\/strong>,, Burgunder JM, Walker F, Davis AM, Busse M, Quinn L, Rodrigues FB, Sampaio C &amp; Goetz CG. (2018). <a href=\"http:\/\/centaur.reading.ac.uk\/74254\/\"><strong>Quality of Life in Huntington&#8217;s Disease: Critique and Recommendations for Measures Assessing Patient Health\u2010Related Quality of Life and Caregiver Quality of Life.<\/strong> <\/a>Movement Disorders, 33(5), 742-749.<\/p>\n<p>Hocaoglu MB, Gaffan EA &amp; <strong>Ho AK<\/strong>, (2012). <a href=\"http:\/\/centaur.reading.ac.uk\/26375\/\"><strong>Health-related quality of life in Huntington\u2019s Disease patients: a comparison of proxy assessment and patient self-rating using the disease-specific Huntington\u2019s Disease health-related quality of life questionnaire (HDQoL).<\/strong><\/a> Journal of Neurology, 259(9), 1793-1800.<\/p>\n<p>Hocaoglu MB, Gaffan EA &amp; <strong>Ho AK<\/strong>,. (2012) <a href=\"http:\/\/centaur.reading.ac.uk\/26368\/\"><strong>The Huntington\u2019s Disease health-related Quality of Life questionnaire (HDQoL): A disease-specific measure of health-related quality of life.<\/strong><\/a> Clinical Genetics 81(2), 117-122.<\/p>\n<p><strong>Ho AK<\/strong>,\u00a0Hocaoglu MB, European Huntington&#8217;s Disease Network Quality of Life Working Group. (2011). <a href=\"http:\/\/centaur.reading.ac.uk\/26367\/\"><strong>Impact of Huntington&#8217;s across the entire disease spectrum: the phases and stages of disease from the patient perspective.<\/strong> <\/a>Clinical Genetics, Sep;80(3):235-9.<\/p>\n<p><strong>Ho AK<\/strong>,\u00a0Gilbert AS, Mason SL, Goodman AO, Barker RA. (2009). <a href=\"http:\/\/centaur.reading.ac.uk\/26365\/\"><strong>Health-related quality of life in Huntington&#8217;s disease: Which factors matter most?<\/strong><\/a> Movement Disorders 24(4):572-76.<\/p>\n<p><strong>Ho AK<\/strong>,\u00a0Robbins AO, Barker RA. (2006). <a href=\"http:\/\/centaur.reading.ac.uk\/14012\/\"><strong>Huntington&#8217;s disease patients have selective problems with insight.<\/strong><\/a> Movement Disorders 21(3):385-9.<\/p>\n<p><strong>Ho AK<\/strong>, Robbins AO, Walters SJ, Kaptoge S, Sahakian BJ, Barker RA. (2004). <a href=\"http:\/\/centaur.reading.ac.uk\/14011\/\"><strong>Health-related quality of life in Huntington&#8217;s disease: a comparison of two generic instruments, SF-36 and SIP<\/strong><\/a>. Movement Disorders, 2004 Nov;19(11):1341-8.<\/p>\n<p>&nbsp;<\/p>\n","protected":false},"excerpt":{"rendered":"<p>HDQOL<\/p>\n","protected":false},"author":111,"featured_media":190,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_acf_changed":false,"_monsterinsights_skip_tracking":false,"_monsterinsights_sitenote_active":false,"_monsterinsights_sitenote_note":"","_monsterinsights_sitenote_category":0,"__cvm_playback_settings":[],"__cvm_video_id":"","footnotes":""},"class_list":["post-173","page","type-page","status-publish","has-post-thumbnail","hentry"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v21.8.1 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>Huntington&#039;s disease health-related quality of life questionnaire (HDQoL) - Neuro Projects<\/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:\/\/research.reading.ac.uk\/neurodegenerative-diseases\/hdqol\/\" \/>\n<meta property=\"og:locale\" content=\"en_GB\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Huntington&#039;s disease health-related quality of life questionnaire (HDQoL) - 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