{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,6,13]],"date-time":"2026-06-13T18:33:08Z","timestamp":1781375588883,"version":"3.54.1"},"reference-count":65,"publisher":"SAGE Publications","issue":"4","license":[{"start":{"date-parts":[[2025,8,25]],"date-time":"2025-08-25T00:00:00Z","timestamp":1756080000000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/journals.sagepub.com\/page\/policies\/text-and-data-mining-license"}],"funder":[{"DOI":"10.13039\/100006259","name":"Teva Pharmaceutical Industries","doi-asserted-by":"publisher","id":[{"id":"10.13039\/100006259","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["journals.sagepub.com"],"crossmark-restriction":true},"short-container-title":["Journal of Huntington's Disease"],"published-print":{"date-parts":[[2025,11]]},"abstract":"<jats:sec>\n                    <jats:title>Background<\/jats:title>\n                    <jats:p>Given the progressive cognitive decline in Huntington's disease (HD), most research in this population relies solely on objective assessments of symptoms and function, rather than on patient-reported outcome (PRO) measures.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Objective<\/jats:title>\n                    <jats:p>The purpose of this paper is to understand how PRO measures relate to clinician-rated assessments and performance-based measures (cognitive tests and device-based estimates) of symptoms and functioning in people with HD.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>We enrolled N\u2009=\u200952 participants with HD in this study. Participants completed several self-reported PROs as well as clinician-administered assessments and performance-based measures (cognitive tests and device-based estimates) of related concepts. Pearson correlations and linear regression models were used to examine the concordance among PROs, clinician-rated assessments, and performance-based measures.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>There were strong relationships among PROs that assessed related concepts. There were also strong relationships between PROs and associated clinician-rated assessments of physical functioning (chorea, sleep\/fatigue) and mental health, and slightly less robust relationships between the PROs and associated clinician-rated assessments for speech\/swallowing and cognition. Relationships between PROs and associated performance-based measures were moderate for chorea\/motor functioning, but negligible for sleep\/fatigue and cognition.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusions<\/jats:title>\n                    <jats:p>Findings from this study support the construct validity of PROs that assess motor functioning and mental health among individuals with HD and indicate that PROs and clinician-rated assessments of these constructs (i.e., motor functioning and mental health) provide complementary information. On the other hand, the negligible relationships between PROs and associated performance-based cognitive tests and between PROs and associated wearable device-based estimates of sleep and physical activity indicate that reliance solely on HD patients\u2019 self-report for these concepts might be misleading.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1177\/18796397251366313","type":"journal-article","created":{"date-parts":[[2025,8,25]],"date-time":"2025-08-25T14:58:03Z","timestamp":1756133883000},"page":"382-395","update-policy":"https:\/\/doi.org\/10.1177\/sage-journals-update-policy","source":"Crossref","is-referenced-by-count":2,"title":["Understanding the relationship between patient-reported outcome measures, clinician-rated assessments, and performance-based measures (cognitive tests and device-based estimates) of symptoms and functioning in people with Huntington's disease"],"prefix":"10.1177","volume":"14","author":[{"ORCID":"https:\/\/orcid.org\/0000-0003-0439-9429","authenticated-orcid":false,"given":"Noelle E","family":"Carlozzi","sequence":"first","affiliation":[{"name":"University of Michigan"},{"name":"Department of Surgery, University of Michigan, Ann Arbor, MI, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-1183-8330","authenticated-orcid":false,"given":"Jonathan P","family":"Troost","sequence":"additional","affiliation":[{"name":"Michigan Institute for Clinical and Health Research, University of Michigan"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Wendy L","family":"Lombard","sequence":"additional","affiliation":[{"name":"University of Michigan"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-2722-1121","authenticated-orcid":false,"given":"Jennifer A","family":"Miner","sequence":"additional","affiliation":[{"name":"University of Michigan"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-1749-9288","authenticated-orcid":false,"given":"Praveen","family":"Dayalu","sequence":"additional","affiliation":[{"name":"University of Michigan"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"179","published-online":{"date-parts":[[2025,8,25]]},"reference":[{"key":"e_1_3_4_2_2","doi-asserted-by":"publisher","DOI":"10.1212\/WNL.0b013e3181eccfa2"},{"key":"e_1_3_4_3_2","doi-asserted-by":"publisher","DOI":"10.1017\/S1355617701711046"},{"key":"e_1_3_4_4_2","doi-asserted-by":"publisher","DOI":"10.1136\/jnnp.71.3.310"},{"key":"e_1_3_4_5_2","doi-asserted-by":"publisher","DOI":"10.1016\/j.biopsych.2006.11.034"},{"key":"e_1_3_4_6_2","doi-asserted-by":"publisher","DOI":"10.1002\/mds.25657"},{"key":"e_1_3_4_7_2","doi-asserted-by":"publisher","DOI":"10.1080\/13803395.2011.574606"},{"key":"e_1_3_4_8_2","doi-asserted-by":"publisher","DOI":"10.1016\/S1474-4422(10)70276-3"},{"key":"e_1_3_4_9_2","doi-asserted-by":"publisher","DOI":"10.1016\/S1474-4422(09)70170-X"},{"key":"e_1_3_4_10_2","doi-asserted-by":"publisher","DOI":"10.3389\/fnagi.2014.00078"},{"key":"e_1_3_4_11_2","doi-asserted-by":"publisher","DOI":"10.1212\/WNL.57.4.658"},{"key":"e_1_3_4_12_2","doi-asserted-by":"publisher","DOI":"10.1002\/mds.22953"},{"key":"e_1_3_4_13_2","doi-asserted-by":"publisher","DOI":"10.1080\/13803390903313564"},{"key":"e_1_3_4_14_2","doi-asserted-by":"publisher","DOI":"10.1136\/jnnp-2011-301940"},{"key":"e_1_3_4_15_2","doi-asserted-by":"publisher","DOI":"10.1037\/neu0000102"},{"key":"e_1_3_4_16_2","doi-asserted-by":"publisher","DOI":"10.1017\/S1355617706060565"},{"key":"e_1_3_4_17_2","doi-asserted-by":"publisher","DOI":"10.1186\/1750-1172-5-40"},{"key":"e_1_3_4_18_2","doi-asserted-by":"publisher","DOI":"10.1016\/S1474-4422(11)70263-0"},{"key":"e_1_3_4_19_2","doi-asserted-by":"publisher","DOI":"10.1212\/01.WNL.0000098878.47789.BD"},{"key":"e_1_3_4_20_2","doi-asserted-by":"publisher","DOI":"10.1001\/archneur.58.2.273"},{"key":"e_1_3_4_21_2","doi-asserted-by":"publisher","DOI":"10.1183\/13993003.01517-2019"},{"key":"e_1_3_4_22_2","doi-asserted-by":"publisher","DOI":"10.1007\/s11136-018-1912-6"},{"key":"e_1_3_4_23_2","doi-asserted-by":"publisher","DOI":"10.1007\/s00415-018-8852-5"},{"key":"e_1_3_4_24_2","doi-asserted-by":"publisher","DOI":"10.1016\/S1470-2045(06)70910-X"},{"key":"e_1_3_4_25_2","article-title":"Relationship between patients\u2019 and clinicians\u2019 assessments of health status before and after knee arthroplasty","volume":"19","author":"Bream E","year":"2010","unstructured":"Bream E, Charman SC, Clift B, et al. 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