{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,6]],"date-time":"2026-10-06T06:17:47Z","timestamp":1791267467968,"version":"4.1.0"},"reference-count":12,"publisher":"Wiley","issue":"2","license":[{"start":{"date-parts":[[2012,1,12]],"date-time":"2012-01-12T00:00:00Z","timestamp":1326326400000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["Clinical Genetics"],"published-print":{"date-parts":[[2012,2]]},"abstract":"<jats:p>Hocaoglu MB, Gaffan EA, Ho AK. The Huntington's disease health\u2010related quality of life questionnaire: a disease\u2010specific measure of health\u2010related quality of life.<\/jats:p><jats:p>Huntington's disease (HD) is a genetic neurodegenerative disorder characterized by motor, cognitive and psychiatric disturbances, and yet there is no disease\u2010specific patient\u2010reported health\u2010related quality of life outcome measure for patients. Our aim was to develop and validate such an instrument, i.e. the Huntington's Disease health\u2010related Quality of Life questionnaire (HDQoL), to capture the true impact of living with this disease. Semi\u2010structured interviews were conducted with the full spectrum of people living with HD, to form a pool of items, which were then examined in a larger sample prior to data\u2010driven item reduction. We provide the statistical basis for the extraction of three different sets of scales from the HDQoL, and present validation and psychometric data on these scales using a sample of 152 participants living with HD. These new patient\u2010derived scales provide promising patient\u2010reported outcome measures for HD.<\/jats:p>","DOI":"10.1111\/j.1399-0004.2011.01823.x","type":"journal-article","created":{"date-parts":[[2011,12,8]],"date-time":"2011-12-08T17:11:25Z","timestamp":1323364285000},"page":"117-122","source":"Crossref","is-referenced-by-count":41,"title":["The Huntington's Disease health\u2010related Quality of Life questionnaire (HDQoL): a disease\u2010specific measure of health\u2010related quality of life"],"prefix":"10.1111","volume":"81","author":[{"given":"MB","family":"Hocaoglu","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"EA","family":"Gaffan","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"AK","family":"Ho","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2012,1,12]]},"reference":[{"key":"e_1_2_6_2_2","volume-title":"Key concepts in medical sociology.","author":"Gabe J","year":"2006"},{"key":"e_1_2_6_3_2","doi-asserted-by":"publisher","DOI":"10.1177\/089198879801100204"},{"key":"e_1_2_6_4_2","volume-title":"Health Status Measurement: a brief but critical introduction.","author":"Jenkinson C","year":"1998"},{"key":"e_1_2_6_5_2","doi-asserted-by":"publisher","DOI":"10.1016\/S0277-9536(02)00159-4"},{"key":"e_1_2_6_6_2","doi-asserted-by":"publisher","DOI":"10.1002\/mds.22412"},{"key":"e_1_2_6_7_2","doi-asserted-by":"publisher","DOI":"10.1002\/mds.20208"},{"key":"e_1_2_6_8_2","doi-asserted-by":"publisher","DOI":"10.1002\/mds.1056"},{"key":"e_1_2_6_9_2","doi-asserted-by":"publisher","DOI":"10.1002\/mds.21920"},{"key":"e_1_2_6_10_2","doi-asserted-by":"publisher","DOI":"10.1111\/j.1399-0004.2011.01748.x"},{"key":"e_1_2_6_11_2","first-page":"40","volume-title":"In pursuit of the quality of life","author":"Fitzpatrick R.","year":"1996"},{"key":"e_1_2_6_12_2","doi-asserted-by":"publisher","DOI":"10.1212\/WNL.29.1.1"},{"key":"e_1_2_6_13_2","doi-asserted-by":"publisher","DOI":"10.1002\/1531-8257(200011)15:6<1112::AID-MDS1008>3.0.CO;2-A"}],"container-title":["Clinical Genetics"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/api.wiley.com\/onlinelibrary\/tdm\/v1\/articles\/10.1111%2Fj.1399-0004.2011.01823.x","content-type":"unspecified","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1111\/j.1399-0004.2011.01823.x","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/full-xml\/10.1111\/j.1399-0004.2011.01823.x","content-type":"application\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1111\/j.1399-0004.2011.01823.x","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2023,10,31]],"date-time":"2023-10-31T01:19:22Z","timestamp":1698715162000},"score":1,"resource":{"primary":{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/10.1111\/j.1399-0004.2011.01823.x"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2012,1,12]]},"references-count":12,"journal-issue":{"issue":"2","published-print":{"date-parts":[[2012,2]]}},"alternative-id":["10.1111\/j.1399-0004.2011.01823.x"],"URL":"https:\/\/doi.org\/10.1111\/j.1399-0004.2011.01823.x","archive":["Portico"],"relation":{},"ISSN":["0009-9163","1399-0004"],"issn-type":[{"value":"0009-9163","type":"print"},{"value":"1399-0004","type":"electronic"}],"subject":[],"published":{"date-parts":[[2012,1,12]]}}}