{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,6,11]],"date-time":"2026-06-11T19:47:33Z","timestamp":1781207253336,"version":"3.54.1"},"reference-count":66,"publisher":"Wiley","issue":"8","license":[{"start":{"date-parts":[[2021,7,20]],"date-time":"2021-07-20T00:00:00Z","timestamp":1626739200000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"funder":[{"DOI":"10.13039\/100006108","name":"National Center for Advancing Translational Sciences","doi-asserted-by":"publisher","award":["UL1TR000433"],"award-info":[{"award-number":["UL1TR000433"]}],"id":[{"id":"10.13039\/100006108","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100006108","name":"National Center for Advancing Translational Sciences","doi-asserted-by":"publisher","award":["UL1TR002240"],"award-info":[{"award-number":["UL1TR002240"]}],"id":[{"id":"10.13039\/100006108","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100000065","name":"National Institute of Neurological Disorders and Stroke","doi-asserted-by":"publisher","award":["R01NS0400068"],"award-info":[{"award-number":["R01NS0400068"]}],"id":[{"id":"10.13039\/100000065","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100000065","name":"National Institute of Neurological Disorders and Stroke","doi-asserted-by":"publisher","award":["R01NS077946"],"award-info":[{"award-number":["R01NS077946"]}],"id":[{"id":"10.13039\/100000065","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100000002","name":"National Institutes of Health","doi-asserted-by":"publisher","id":[{"id":"10.13039\/100000002","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100008269","name":"Michigan Institute for Clinical and Health Research","doi-asserted-by":"publisher","id":[{"id":"10.13039\/100008269","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Ann Clin Transl Neurol"],"published-print":{"date-parts":[[2021,8]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec><jats:title>Objective<\/jats:title><jats:p>Previous work in Huntington\u2019s disease (HD) has shown that a sense of meaning and purpose (M&amp;P) is positively associated with positive affect and well\u2010being (PAW); however, it was unknown whether HD\u2010validated patient\u2010reported outcomes (PROs) influence this association and how M&amp;P impacts PROs in the future. Our study was designed to examine if HD\u2010validated PROs moderate the relationship between M&amp;P and PAW and to evaluate if baseline M&amp;P predicts 12\u2010 and 24\u2010month changes in HD\u2010validated PROs.<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>This was a longitudinal, multicenter study to develop several PROs (e.g., specific for the physical, emotional, cognitive, and social domains) for people with HD (HDQLIFE). The sample consisted of 322 people with HD (<jats:italic>n<\/jats:italic>\u00a0=\u00a050 prodromal, <jats:italic>n<\/jats:italic>\u00a0=\u00a0171 early\u2010stage manifest, and <jats:italic>n<\/jats:italic>\u00a0=\u00a0101 late\u2010stage manifest HD). A single, multivariate linear mixed\u2010effects model was performed with PAW as the outcome predicted by main effects for M&amp;P and several moderators (i.e., an HD\u2010validated PRO) and interactions between M&amp;P and a given PRO. Linear\u2010mixed models were also used to assess if baseline M&amp;P predicted HD\u2010validated PROs at 12 and 24\u00a0months.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>Higher M&amp;P was positively associated with higher PAW regardless of the magnitude of symptom burden, as represented by HD\u2010validated PROs, and independent of disease stage. In our primary analysis, baseline M&amp;P predicted increased PAW and decreased depression, anxiety, anger, emotional\/behavioral disruptions, and cognitive decline at 12 and 24\u00a0months across all disease stages.<\/jats:p><\/jats:sec><jats:sec><jats:title>Interpretation<\/jats:title><jats:p>These findings parallel those seen in the oncology population and have implications for adapting and developing psychotherapeutic and palliative HD interventions.<\/jats:p><\/jats:sec>","DOI":"10.1002\/acn3.51424","type":"journal-article","created":{"date-parts":[[2021,7,20]],"date-time":"2021-07-20T08:13:38Z","timestamp":1626768818000},"page":"1668-1679","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":13,"title":["Meaning and purpose in Huntington\u2019s disease: a longitudinal study of its impact on quality of life"],"prefix":"10.1002","volume":"8","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-5420-9297","authenticated-orcid":false,"given":"Leonard L.","family":"Sokol","sequence":"first","affiliation":[{"name":"The Ken and Ruth Davee Department of Neurology Northwestern University Feinberg School of Medicine Chicago Illinois USA"},{"name":"Center for Bioethics and Humanities McGaw Bioethics Scholars Program Northwestern University Feinberg School of Medicine Chicago Illinois USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jonathan P.","family":"Troost","sequence":"additional","affiliation":[{"name":"Michigan Institute for Clinical and Health Research University of Michigan Ann Arbor Michigan USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Benzi M.","family":"Kluger","sequence":"additional","affiliation":[{"name":"Departments of Neurology and Medicine University of Rochester Medical Center Rochester New York USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Allison J.","family":"Applebaum","sequence":"additional","affiliation":[{"name":"Department of Psychiatry &amp; Behavioral Sciences Memorial Sloan Kettering Cancer Center New York New York USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jane S.","family":"Paulsen","sequence":"additional","affiliation":[{"name":"Department of Neurology University of Wisconsin\u2010Madison Madison Wisconsin USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Danny","family":"Bega","sequence":"additional","affiliation":[{"name":"The Ken and Ruth Davee Department of Neurology Northwestern University Feinberg School of Medicine Chicago Illinois USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Samuel","family":"Frank","sequence":"additional","affiliation":[{"name":"Department of Neurology Beth Israel Deaconess Medical Center Harvard Medical School Boston Massachusetts USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Joshua M.","family":"Hauser","sequence":"additional","affiliation":[{"name":"Department of Medicine Feinberg School of Medicine and Palliative Care Service Jesse Brown VA Medical Center Chicago Illinois USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Nicholas R.","family":"Boileau","sequence":"additional","affiliation":[{"name":"Department of Physical Medicine and Rehabilitation University of Michigan Ann Arbor Michigan USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Colin A.","family":"Depp","sequence":"additional","affiliation":[{"name":"Department of Psychiatry University of California San Diego California USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"David","family":"Cella","sequence":"additional","affiliation":[{"name":"The Ken and Ruth Davee Department of Neurology Northwestern University Feinberg School of Medicine Chicago Illinois USA"},{"name":"Department of Medical Social Sciences Northwestern University Feinberg School of Medicine Chicago Illinois USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Noelle E.","family":"Carlozzi","sequence":"additional","affiliation":[{"name":"Department of Physical Medicine and Rehabilitation University of Michigan Ann Arbor Michigan USA"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2021,7,20]]},"reference":[{"key":"e_1_2_8_2_1","doi-asserted-by":"publisher","DOI":"10.1016\/S0140-6736(07)60111-1"},{"key":"e_1_2_8_3_1","doi-asserted-by":"publisher","DOI":"10.1007\/s13311-013-0244-z"},{"key":"e_1_2_8_4_1","doi-asserted-by":"publisher","DOI":"10.1002\/mds.26014"},{"key":"e_1_2_8_5_1","doi-asserted-by":"publisher","DOI":"10.1002\/mdc3.12502"},{"key":"e_1_2_8_6_1","doi-asserted-by":"publisher","DOI":"10.5334\/tohm.178"},{"key":"e_1_2_8_7_1","doi-asserted-by":"publisher","DOI":"10.1007\/s11136-016-1386-3"},{"key":"e_1_2_8_8_1","doi-asserted-by":"publisher","DOI":"10.1002\/mds.22412"},{"key":"e_1_2_8_9_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1399-0004.2011.01748.x"},{"key":"e_1_2_8_10_1","doi-asserted-by":"publisher","DOI":"10.3233\/JHD-200418"},{"key":"e_1_2_8_11_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1442-2018.2004.00183.x"},{"key":"e_1_2_8_12_1","doi-asserted-by":"publisher","DOI":"10.1007\/s11136-016-1354-y"},{"key":"e_1_2_8_13_1","doi-asserted-by":"publisher","DOI":"10.1001\/jama.2019.21834"},{"key":"e_1_2_8_14_1","doi-asserted-by":"publisher","DOI":"10.1089\/jpm.2020.0129"},{"key":"e_1_2_8_15_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jpainsymman.2017.09.004"},{"key":"e_1_2_8_16_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.psychres.2013.08.002"},{"key":"e_1_2_8_17_1","doi-asserted-by":"publisher","DOI":"10.1023\/B:JOBA.0000013660.22413.e0"},{"key":"e_1_2_8_18_1","doi-asserted-by":"publisher","DOI":"10.1002\/jclp.1114"},{"key":"e_1_2_8_19_1","doi-asserted-by":"publisher","DOI":"10.1056\/NEJM199804233381706"},{"key":"e_1_2_8_20_1","doi-asserted-by":"publisher","DOI":"10.1016\/S0033-3182(98)71325-8"},{"key":"e_1_2_8_21_1","doi-asserted-by":"publisher","DOI":"10.1016\/S0140-6736(03)13310-7"},{"key":"e_1_2_8_22_1","doi-asserted-by":"publisher","DOI":"10.1002\/pon.4578"},{"key":"e_1_2_8_23_1","doi-asserted-by":"publisher","DOI":"10.1002\/1097-0142(20000615)88:12<2868::AID-CNCR30>3.0.CO;2-K"},{"key":"e_1_2_8_24_1","doi-asserted-by":"publisher","DOI":"10.1016\/S0033-3182(10)70669-1"},{"key":"e_1_2_8_25_1","doi-asserted-by":"publisher","DOI":"10.1001\/jama.284.22.2907"},{"key":"e_1_2_8_26_1","doi-asserted-by":"publisher","DOI":"10.1089\/109662103322654901"},{"key":"e_1_2_8_27_1","doi-asserted-by":"publisher","DOI":"10.1002\/(SICI)1099-1611(199909\/10)8:5<417::AID-PON398>3.0.CO;2-4"},{"key":"e_1_2_8_28_1","doi-asserted-by":"publisher","DOI":"10.1002\/cncr.31539"},{"key":"e_1_2_8_29_1","doi-asserted-by":"publisher","DOI":"10.1200\/JCO.2011.36.2517"},{"key":"e_1_2_8_30_1","doi-asserted-by":"publisher","DOI":"10.1002\/pon.1556"},{"key":"e_1_2_8_31_1","doi-asserted-by":"publisher","DOI":"10.1200\/JCO.2017.77.1097"},{"key":"e_1_2_8_32_1","doi-asserted-by":"publisher","DOI":"10.1200\/JCO.2005.08.391"},{"key":"e_1_2_8_33_1","doi-asserted-by":"publisher","DOI":"10.3233\/JHD-180341"},{"key":"e_1_2_8_34_1","doi-asserted-by":"publisher","DOI":"10.1007\/s11136-013-0382-0"},{"key":"e_1_2_8_35_1","doi-asserted-by":"publisher","DOI":"10.1016\/S0003-9993(98)90051-X"},{"key":"e_1_2_8_36_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jbi.2015.05.003"},{"key":"e_1_2_8_37_1","doi-asserted-by":"publisher","DOI":"10.1136\/jnnp.2007.128728"},{"key":"e_1_2_8_38_1","first-page":"136","article-title":"Unified Huntington\u2019s disease rating scale: reliability and consistency","volume":"11","author":"Kieburtz K","year":"2001","journal-title":"Neurology"},{"key":"e_1_2_8_39_1","first-page":"271","article-title":"Assessment of functional capacity in neurodegenerative movement disorders: Huntington\u2019s disease as a prototype","author":"Shoulson I","year":"1989","journal-title":"Quantif Neurol deficit Bost Butterworths"},{"key":"e_1_2_8_40_1","article-title":"Revised comprehensive norms for an expanded Halstead\u2010Reitan Battery: demographically adjusted neuropsychological norms for African American and Caucasian adults, professional manual","author":"Heaton RK","year":"2004","journal-title":"Psychol Assess Resour"},{"key":"e_1_2_8_41_1","doi-asserted-by":"publisher","DOI":"10.1007\/s00415-019-09417-7"},{"key":"e_1_2_8_42_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.apmr.2011.01.025"},{"key":"e_1_2_8_43_1","doi-asserted-by":"publisher","DOI":"10.3233\/JHD-190364"},{"key":"e_1_2_8_44_1","doi-asserted-by":"publisher","DOI":"10.1007\/s11136-020-02596-1"},{"key":"e_1_2_8_45_1","doi-asserted-by":"publisher","DOI":"10.1177\/1073191111411667"},{"key":"e_1_2_8_46_1","doi-asserted-by":"publisher","DOI":"10.1097\/01.mlr.0000258615.42478.55"},{"key":"e_1_2_8_47_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jclinepi.2010.04.011"},{"key":"e_1_2_8_48_1","doi-asserted-by":"publisher","DOI":"10.1007\/s11136-016-1307-5"},{"key":"e_1_2_8_49_1","doi-asserted-by":"publisher","DOI":"10.1002\/mds.27908"},{"key":"e_1_2_8_50_1","doi-asserted-by":"publisher","DOI":"10.1002\/mds.27046"},{"key":"e_1_2_8_51_1","doi-asserted-by":"publisher","DOI":"10.1007\/s11136-016-1273-y"},{"key":"e_1_2_8_52_1","doi-asserted-by":"publisher","DOI":"10.1007\/s00415-017-8677-7"},{"key":"e_1_2_8_53_1","doi-asserted-by":"publisher","DOI":"10.1007\/s11136-019-02391-7"},{"key":"e_1_2_8_54_1","doi-asserted-by":"publisher","DOI":"10.1007\/s11136-017-1755-6"},{"key":"e_1_2_8_55_1","first-page":"304","article-title":"The use of PROMIS and assessment center to deliver patient\u2010reported outcome measures in clinical research","volume":"14","author":"Gershon RC","year":"2010","journal-title":"J Appl Meas"},{"key":"e_1_2_8_56_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.2517-6161.1995.tb02031.x"},{"key":"e_1_2_8_57_1","doi-asserted-by":"publisher","DOI":"10.1037\/bul0000088"},{"key":"e_1_2_8_58_1","doi-asserted-by":"publisher","DOI":"10.1001\/archgenpsychiatry.2009.208"},{"key":"e_1_2_8_59_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jns.2019.116523"},{"key":"e_1_2_8_60_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jpainsymman.2016.12.331"},{"key":"e_1_2_8_61_1","doi-asserted-by":"publisher","DOI":"10.1177\/1049909117708195"},{"key":"e_1_2_8_62_1","doi-asserted-by":"publisher","DOI":"10.1037\/0022-3514.90.1.179"},{"key":"e_1_2_8_63_1","doi-asserted-by":"publisher","DOI":"10.1080\/02699930701347304"},{"key":"e_1_2_8_64_1","doi-asserted-by":"publisher","DOI":"10.1007\/s11136-020-02489-3"},{"key":"e_1_2_8_65_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jad.2019.03.043"},{"key":"e_1_2_8_66_1","doi-asserted-by":"publisher","DOI":"10.1037\/a0018697"},{"key":"e_1_2_8_67_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jagp.2015.08.007"}],"container-title":["Annals of Clinical and Translational Neurology"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1002\/acn3.51424","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/full-xml\/10.1002\/acn3.51424","content-type":"application\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1002\/acn3.51424","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2023,8,29]],"date-time":"2023-08-29T20:58:47Z","timestamp":1693342727000},"score":1,"resource":{"primary":{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/10.1002\/acn3.51424"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2021,7,20]]},"references-count":66,"journal-issue":{"issue":"8","published-print":{"date-parts":[[2021,8]]}},"alternative-id":["10.1002\/acn3.51424"],"URL":"https:\/\/doi.org\/10.1002\/acn3.51424","archive":["Portico"],"relation":{},"ISSN":["2328-9503","2328-9503"],"issn-type":[{"value":"2328-9503","type":"print"},{"value":"2328-9503","type":"electronic"}],"subject":[],"published":{"date-parts":[[2021,7,20]]},"assertion":[{"value":"2021-04-29","order":0,"name":"received","label":"Received","group":{"name":"publication_history","label":"Publication History"}},{"value":"2021-06-15","order":1,"name":"accepted","label":"Accepted","group":{"name":"publication_history","label":"Publication History"}},{"value":"2021-07-20","order":2,"name":"published","label":"Published","group":{"name":"publication_history","label":"Publication History"}}]}}