{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,11,7]],"date-time":"2026-11-07T02:53:21Z","timestamp":1794020001583,"version":"4.8.0"},"reference-count":33,"publisher":"Wiley","issue":"5","license":[{"start":{"date-parts":[[2007,5,2]],"date-time":"2007-05-02T00:00:00Z","timestamp":1178064000000},"content-version":"vor","delay-in-days":1,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["Clinical Genetics"],"published-print":{"date-parts":[[2007,5]]},"abstract":"<jats:p>Research into the experience of the Huntington Disease (HD) spousal carer has established that carers experience several unique obstacles within their care\u2010giving role. However, there is still a need to establish methodically the factors that impact on the HD spousal carers\u2019 situation and ultimately their quality of life. The aim of this pilot study, which was a result of three previous exploratory studies, was to validate a HD\u2010specific quality\u2010of\u2010life (QoL) measure, the Huntington disease quality\u2010of\u2010life battery for carers (HDQoL\u2010C) for use (initially) with spousal carers of HD patients. Eighty\u2010seven HD spousal carers took part in the piloting of the HDQoL\u2010C to assess its reliability and validity as a tool for use within QoL research. Results established the HDQoL\u2010C as a multidimensional and psychometrically sound disease\u2010specific and subjective QoL assessment tool that incorporates the individual\u2019s physical health, psychological state, level of independence, social relationships and personal beliefs. The HDQoL\u2010C demonstrates good internal consistency, test\u2013re\u2010test reliability and congruent validity.<\/jats:p>","DOI":"10.1111\/j.1399-0004.2007.00784.x","type":"journal-article","created":{"date-parts":[[2007,5,9]],"date-time":"2007-05-09T00:05:58Z","timestamp":1178669158000},"page":"434-445","source":"Crossref","is-referenced-by-count":45,"title":["The Huntington\u2019s Disease quality of life battery for carers: reliability and validity"],"prefix":"10.1111","volume":"71","author":[{"given":"A","family":"Aubeeluck","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"H","family":"Buchanan","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2007,5,2]]},"reference":[{"key":"e_1_2_10_2_2","volume-title":"Huntington\u2019s Disease: a disorder of families","author":"Folstein SE","year":"1989"},{"key":"e_1_2_10_3_2","volume-title":"Major problems in neurology: Huntington\u2019s Disease","author":"Harper PS","year":"1996"},{"key":"e_1_2_10_4_2","volume-title":"Huntington\u2019s Disease","author":"Bates G","year":"2003"},{"key":"e_1_2_10_5_2","volume-title":"Huntington\u2019s Disease: the facts","author":"Quarrell O","year":"1999"},{"key":"e_1_2_10_6_2","doi-asserted-by":"publisher","DOI":"10.1212\/WNL.34.8.1059"},{"key":"e_1_2_10_7_2","doi-asserted-by":"publisher","DOI":"10.1097\/00005053-198004000-00003"},{"key":"e_1_2_10_8_2","first-page":"101","article-title":"Social perspectives in Huntington\u2019s Chorea","volume":"58","author":"Hayden MR","year":"1980","journal-title":"SA Med J"},{"key":"e_1_2_10_9_2","doi-asserted-by":"publisher","DOI":"10.1002\/ajmg.1320480306"},{"issue":"1","key":"e_1_2_10_10_2","first-page":"95","article-title":"Capturing the Huntington\u2019s Disease carer experience: a preliminary investigation using the \u2018Photovoice\u2019 method, Dementia","volume":"5","author":"Aubeeluck A","year":"2006","journal-title":"Int J Soc Res Pract"},{"key":"e_1_2_10_11_2","doi-asserted-by":"publisher","DOI":"10.2466\/pr0.1993.72.3c.1099"},{"issue":"1","key":"e_1_2_10_12_2","first-page":"19","article-title":"Huntington\u2019s Disease \u2013 falling through the net","volume":"25","author":"Shakespeare J","year":"1993","journal-title":"Health Trends (Eng)"},{"key":"e_1_2_10_13_2","doi-asserted-by":"publisher","DOI":"10.1002\/1096-8628(20000612)96:3<353::AID-AJMG23>3.0.CO;2-9"},{"key":"e_1_2_10_14_2","doi-asserted-by":"publisher","DOI":"10.1002\/ajmg.1320310316"},{"key":"e_1_2_10_15_2","doi-asserted-by":"publisher","DOI":"10.1002\/(SICI)1096-8628(20000103)90:1<49::AID-AJMG10>3.0.CO;2-3"},{"key":"e_1_2_10_16_2","doi-asserted-by":"publisher","DOI":"10.1017\/S0021932000014413"},{"key":"e_1_2_10_17_2","doi-asserted-by":"publisher","DOI":"10.1038\/306234a0"},{"key":"e_1_2_10_18_2","doi-asserted-by":"publisher","DOI":"10.1002\/ajmg.1320420417"},{"key":"e_1_2_10_19_2","doi-asserted-by":"publisher","DOI":"10.4135\/9781849209748"},{"key":"e_1_2_10_20_2","doi-asserted-by":"publisher","DOI":"10.12968\/bjnn.2006.2.2.20918"},{"key":"e_1_2_10_21_2","volume-title":"The Comprehensive Quality of Life Scale","author":"Cummins RA","year":"1997"},{"key":"e_1_2_10_22_2","unstructured":"World Health Organisation. 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