{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,5,20]],"date-time":"2026-05-20T17:20:36Z","timestamp":1779297636444,"version":"3.51.4"},"reference-count":36,"publisher":"SAGE Publications","issue":"1","license":[{"start":{"date-parts":[[2023,3,22]],"date-time":"2023-03-22T00:00:00Z","timestamp":1679443200000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"},{"start":{"date-parts":[[2023,3,22]],"date-time":"2023-03-22T00:00:00Z","timestamp":1679443200000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/journals.sagepub.com\/page\/policies\/text-and-data-mining-license"}],"content-domain":{"domain":["journals.sagepub.com"],"crossmark-restriction":true},"short-container-title":["Palliative Medicine Reports"],"published-print":{"date-parts":[[2023,12]]},"abstract":"<jats:sec>\n                    <jats:title>Objective:<\/jats:title>\n                    <jats:p>With Huntington disease (HD), a fatal neurodegenerative disease where the prevalence of suicidal thoughts and behavior (STB) remains elevated as compared to other neurological disorders, it is unknown whether STB and health-related quality of life (HRQoL) affect plans for the end of life or more broadly, advance care planning (ACP). Conversely, it is unknown whether ACP would provoke future changes to STB and HRQoL. Therefore, we sought to evaluate whether STB and HRQoL patient-reported outcomes (PROs) contribute to ACP and whether ACP relates to changes in STB and HRQoL at 24 months.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods:<\/jats:title>\n                    <jats:p>HD-validated clinician- and patient-assessments (i.e., HRQoL PROs) were obtained at baseline enrollment, 12 and 24 months through our multi-center study (HDQLIFE\u2122) throughout the United States among people with premanifest, early-stage, and late-stage manifest HD. We used linear mixed-effects models to determine the relationships between STB and HRQoL at baseline and HDQLIFE End of Life Planning at follow-up. Separate linear mixed-effects models were used to assess the relationship between HDQLIFE End of Life Planning at baseline, and HRQoL and STB at 12 and 24 months. False discovery rate adjustments were used to account for multiple comparisons.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results:<\/jats:title>\n                    <jats:p>At baseline enrollment, STB and HRQoL were not related to HDQLIFE End of Life Planning at 12 or 24 months. Similarly, at baseline, HDQLIFE End of Life Planning demonstrated no association with STB or HRQoL at 12 or 24 months.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Interpretation:<\/jats:title>\n                    <jats:p>STB and HRQoL PROs do not significantly affect patient engagement with ACP. Most importantly, engaging in ACP does not cause untoward effects on HRQoL or STB for this rare neurodegenerative disease where the lifetime prevalence of STB approaches 30%.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1089\/pmr.2022.0034","type":"journal-article","created":{"date-parts":[[2023,3,24]],"date-time":"2023-03-24T10:47:34Z","timestamp":1679654854000},"update-policy":"https:\/\/doi.org\/10.1177\/sage-journals-update-policy","source":"Crossref","is-referenced-by-count":2,"title":["Advance Care Planning and Health-Related Quality of Life in Huntington Disease: Results from a Multicenter National Study"],"prefix":"10.1177","volume":"4","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":"McGaw Bioethics Scholars Program, Center for Bioethics and Humanities, Northwestern University Feinberg School of Medicine, Chicago, Illinois, USA."},{"name":"Division of Palliative Medicine, Department of Medicine, University of California, San Francisco, San Francisco, California, USA."}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Jonathan P.","family":"Troost","sequence":"additional","affiliation":[{"name":"Michigan Institute for Clinical and Health Research, University of Michigan, Ann Arbor, Michigan, USA."}],"role":[{"role":"author","vocabulary":"crossref"}]},{"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":[{"role":"author","vocabulary":"crossref"}]},{"given":"Benzi M.","family":"Kluger","sequence":"additional","affiliation":[{"name":"Department of Neurology, University of Rochester Medical Center, Rochester, New York, USA."},{"name":"Department of Medicine, University of Rochester Medical Center, Rochester, New York, USA."}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Holly G.","family":"Prigerson","sequence":"additional","affiliation":[{"name":"Cornell Center for Research on End-of-Life Care, Weill Cornell Medicine, New York, New York, USA."}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Martha","family":"Nance","sequence":"additional","affiliation":[{"name":"Struthers Parkinson's Center, Golden Valley, Minnesota, USA."}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Samuel","family":"Frank","sequence":"additional","affiliation":[{"name":"Department of Neurology, Beth Israel Deaconess Medical Center, Harvard Medical School, Boston, Massachusetts, USA."}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Joel S.","family":"Perlmutter","sequence":"additional","affiliation":[{"name":"Neurology, Radiology, Neuroscience, Physical Therapy and Occupational Therapy, Washington University in St. Louis, St. Louis, Missouri, USA."}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Praveen","family":"Dayalu","sequence":"additional","affiliation":[{"name":"Department of Neurology, University of Michigan, Ann Arbor, Michigan, USA."}],"role":[{"role":"author","vocabulary":"crossref"}]},{"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":[{"role":"author","vocabulary":"crossref"}]},{"given":"Noelle E.","family":"Carlozzi","sequence":"additional","affiliation":[{"name":"Department of Physical Medicine and Rehabilitation, University of Michigan, Ann Arbor, Michigan, USA."}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"179","published-online":{"date-parts":[[2023,3,22]]},"reference":[{"issue":"2","key":"e_1_3_5_2_2","doi-asserted-by":"crossref","DOI":"10.1016\/j.jpainsymman.2017.08.025","article-title":"Outcomes that define successful advance care planning: A Delphi Panel Consensus","volume":"55","author":"Sudore RL","year":"2018","unstructured":"Sudore RL, , Heyland DK, , Lum HD, et al. Outcomes that define successful advance care planning: A Delphi Panel Consensus. 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Detection of Huntington's disease decades before diagnosis: The Predict-HD study. 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Identifying motor, emotional\u2013behavioral, and cognitive deficits that comprise the Triad of HD Symptoms from patient, caregiver, and provider perspectives. Tremor Other Hyperkinet Mov, 2014; 4(0):224.","journal-title":"Tremor Other Hyperkinet Mov"},{"key":"e_1_3_5_22_2","doi-asserted-by":"publisher","DOI":"10.1177\/1359105312438109"},{"key":"e_1_3_5_23_2","doi-asserted-by":"publisher","DOI":"10.1007\/s11136-016-1273-y"},{"key":"e_1_3_5_24_2","doi-asserted-by":"publisher","DOI":"10.1002\/mds.27908"},{"key":"e_1_3_5_25_2","doi-asserted-by":"publisher","DOI":"10.1007\/s11136-013-0382-0"},{"key":"e_1_3_5_26_2","doi-asserted-by":"publisher","DOI":"10.1007\/s11136-017-1755-6"},{"key":"e_1_3_5_27_2","doi-asserted-by":"publisher","DOI":"10.1002\/mds.870110204"},{"key":"e_1_3_5_28_2","doi-asserted-by":"publisher","DOI":"10.1176\/appi.neuropsych.13070169"},{"key":"e_1_3_5_29_2","unstructured":"Shoulson I Kurlan R Rubin AJ et al. Assessment of functional capacity in neurodegenerative movement disorders: Huntington's disease as a prototype. In: Quantification of Neurologic Deficit. (Munsat T. ed.) Butterworths: Boston MA USA; 1989; pp. 271\u2013283."},{"issue":"1","key":"e_1_3_5_30_2","doi-asserted-by":"crossref","first-page":"98","DOI":"10.1007\/s00415-017-8677-7","article-title":"A new measure for end of life planning, preparation, and preferences in Huntington disease: HDQLIFE end of life planning","volume":"265","author":"Coordinators HSI and","year":"2018","unstructured":"Coordinators HSI and, , Carlozzi NE, , Hahn EA, et al. A new measure for end of life planning, preparation, and preferences in Huntington disease: HDQLIFE end of life planning. 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