{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,8]],"date-time":"2026-10-08T23:27:20Z","timestamp":1791502040701,"version":"4.3.4"},"reference-count":12,"publisher":"Wiley","issue":"3","license":[{"start":{"date-parts":[[2025,12,12]],"date-time":"2025-12-12T00:00:00Z","timestamp":1765497600000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by-nc-nd\/4.0\/"},{"start":{"date-parts":[[2025,12,12]],"date-time":"2025-12-12T00:00:00Z","timestamp":1765497600000},"content-version":"tdm","delay-in-days":0,"URL":"http:\/\/doi.wiley.com\/10.1002\/tdm_license_1.1"}],"funder":[{"DOI":"10.13039\/100000864","name":"Michael J. Fox Foundation for Parkinson's Research","doi-asserted-by":"publisher","award":["MJFF\u2010023274"],"award-info":[{"award-number":["MJFF\u2010023274"]}],"id":[{"id":"10.13039\/100000864","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["movementdisorders.onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Movement Disorders"],"published-print":{"date-parts":[[2026,3]]},"abstract":"Abstract<\/jats:title>\n \n Background<\/jats:title>\n Little is known about what matters most for quality of life in people with Parkinson's disease and how much it varies between individuals.<\/jats:p>\n <\/jats:sec>\n \n Objective<\/jats:title>\n The goal was to define the relative impact of quality of life determinants in people with Parkinson's disease, including variation across individuals and by disease severity, gender, age, and ethnicity.<\/jats:p>\n <\/jats:sec>\n \n Methods<\/jats:title>\n Sixty\u2010one factors potentially associated with quality of life in people with Parkinson's disease were identified from the literature and nominated by participants with Parkinson's disease. Forty\u2010four participants then rated their degree of impact on quality of life from \u201ca lot\u201d to \u201cnot at all,\u201d and identified their \u201ctop 3 most important\u201d factors.<\/jats:p>\n <\/jats:sec>\n \n Results<\/jats:title>\n At the individual level, determinants of utmost importance varied greatly, with 39 of 61 factors being reported at least once in the \u201ctop 3.\u201d There were 17 factors that at least 50% of the sample agreed affected quality of life \u201ca lot,\u201d and only two were symptoms of the disease. Twelve (all positive experiences) retained at least 50% agreement across subgroups defined by disease severity, age, gender and ethnicity. Symptom\u2010related factors of high importance varied markedly in mild disease subgroup in particular.<\/jats:p>\n <\/jats:sec>\n \n Conclusions<\/jats:title>\n \n Factors that are not direct consequences of the disease, but may be highly personal and interfere with what one finds meaningful, emerged as highly relevant. Symptoms also greatly impacted quality of life for most individuals, but specific symptoms varied across individuals. Quality of life determinants in people with Parkinson's disease appear highly individualized, and currently used measurement tools with fixed items may not be optimal. \u00a9 2025 The Author(s).\n Movement Disorders<\/jats:italic>\n published by Wiley Periodicals LLC on behalf of International Parkinson and Movement Disorder Society. \u00a9 2025 The Author(s).\n Movement Disorders<\/jats:italic>\n published by Wiley Periodicals LLC on behalf of International Parkinson and Movement Disorder Society.\n <\/jats:p>\n <\/jats:sec>","DOI":"10.1002\/mds.70134","type":"journal-article","created":{"date-parts":[[2025,12,13]],"date-time":"2025-12-13T05:31:31Z","timestamp":1765603891000},"page":"741-749","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":3,"title":["It Is Personal: What People with Parkinson's Disease Say Matters Most for Quality of Life"],"prefix":"10.1002","volume":"41","author":[{"ORCID":"https:\/\/orcid.org\/0009-0002-2488-0244","authenticated-orcid":false,"given":"Samantha","family":"Dorrance","sequence":"first","affiliation":[{"name":"Edmond J. Safra Program in Parkinson's Disease and the Morton and Gloria Shulman Movement Disorders Clinic, Toronto Western Hospital University Health Network Toronto Ontario Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0009-0004-6180-7892","authenticated-orcid":false,"given":"Richa","family":"Patel","sequence":"additional","affiliation":[{"name":"Edmond J. Safra Program in Parkinson's Disease and the Morton and Gloria Shulman Movement Disorders Clinic, Toronto Western Hospital University Health Network Toronto Ontario Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-7905-9336","authenticated-orcid":false,"given":"Glenn T.","family":"Stebbins","sequence":"additional","affiliation":[{"name":"Department of Neurological Sciences Rush University Medical Center Chicago Illinois USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-1170-6688","authenticated-orcid":false,"given":"Jamie","family":"Adams","sequence":"additional","affiliation":[{"name":"Department of Neurology University of Rochester Rochester New York USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-2039-6773","authenticated-orcid":false,"given":"Allison M.","family":"Allen","sequence":"additional","affiliation":[{"name":"Duke University Medical Center Durham North Carolina USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Tara","family":"Hastings","sequence":"additional","affiliation":[{"name":"Sanofi New Jersey USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-6224-7573","authenticated-orcid":false,"given":"Soania","family":"Mathur","sequence":"additional","affiliation":[{"name":"Parkinson's Research Advocate Toronto Ontario USA"},{"name":"UnshakeableMD Toronto Ontario Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-0060-9935","authenticated-orcid":false,"given":"Onanong","family":"Phokaewvarangkul","sequence":"additional","affiliation":[{"name":"Chulalongkorn Centre of Excellence for Parkinson's Disease and Related Disorders, Department of Medicine, Faculty of Medicine Chulalongkorn University and King Chulalongkorn Memorial Hospital, Thai Red Cross Society Bangkok Thailand"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-2625-2025","authenticated-orcid":false,"given":"Gary","family":"Rafaloff","sequence":"additional","affiliation":[{"name":"Parkinson's Research Advocate Westlake Florida USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-2564-7375","authenticated-orcid":false,"given":"Rajasumi","family":"Rajalingam","sequence":"additional","affiliation":[{"name":"Edmond J. Safra Program in Parkinson's Disease and the Morton and Gloria Shulman Movement Disorders Clinic, Toronto Western Hospital University Health Network Toronto Ontario Canada"},{"name":"Department of Psychiatry Western Michigan University Homer Stryker M.D. School of Medicine Kalamazoo Michigan USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-9872-6680","authenticated-orcid":false,"given":"Anette","family":"Schrag","sequence":"additional","affiliation":[{"name":"Department of Clinical and Movement Neurosciences, University College London Institute of Neurology University College London United Kingdom"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Christine","family":"Sun","sequence":"additional","affiliation":[{"name":"Edmond J. Safra Program in Parkinson's Disease and the Morton and Gloria Shulman Movement Disorders Clinic, Toronto Western Hospital University Health Network Toronto Ontario Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-7858-9183","authenticated-orcid":false,"given":"Jennifer","family":"Mammen","sequence":"additional","affiliation":[{"name":"College of Nursing and Health Sciences University of Massachusetts Dartmouth North Dartmouth Massachusetts USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-9236-9328","authenticated-orcid":false,"given":"Connie","family":"Marras","sequence":"additional","affiliation":[{"name":"Edmond J. Safra Program in Parkinson's Disease and the Morton and Gloria Shulman Movement Disorders Clinic, Toronto Western Hospital University Health Network Toronto Ontario Canada"},{"name":"University of Toronto Toronto Ontario Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2025,12,12]]},"reference":[{"key":"e_1_2_11_2_1","doi-asserted-by":"publisher","DOI":"10.1016\/S1474-4422(20)30064-8"},{"key":"e_1_2_11_3_1","doi-asserted-by":"publisher","DOI":"10.1016\/0277-9536(95)00112-K"},{"key":"e_1_2_11_4_1","doi-asserted-by":"publisher","DOI":"10.1177\/026921639701100201"},{"key":"e_1_2_11_5_1","doi-asserted-by":"publisher","DOI":"10.1038\/s41531-024-00789-w"},{"key":"e_1_2_11_6_1","doi-asserted-by":"publisher","DOI":"10.1002\/mds.21099"},{"key":"e_1_2_11_7_1","doi-asserted-by":"publisher","DOI":"10.1080\/09638288.2021.1981467"},{"key":"e_1_2_11_8_1","doi-asserted-by":"publisher","DOI":"10.1093\/arclin\/acz063"},{"key":"e_1_2_11_9_1","doi-asserted-by":"publisher","DOI":"10.3233\/JPD-2012-12075"},{"key":"e_1_2_11_10_1","doi-asserted-by":"publisher","DOI":"10.3233\/JPD-249009"},{"key":"e_1_2_11_11_1","doi-asserted-by":"publisher","DOI":"10.3233\/JPD-230235"},{"key":"e_1_2_11_12_1","doi-asserted-by":"publisher","DOI":"10.1155\/2020\/8857385"},{"key":"e_1_2_11_13_1","doi-asserted-by":"publisher","DOI":"10.1038\/s41598-024-71555-4"}],"container-title":["Movement Disorders"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/movementdisorders.onlinelibrary.wiley.com\/doi\/pdf\/10.1002\/mds.70134","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/movementdisorders.onlinelibrary.wiley.com\/doi\/full-xml\/10.1002\/mds.70134","content-type":"application\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/movementdisorders.onlinelibrary.wiley.com\/doi\/pdf\/10.1002\/mds.70134","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,8,13]],"date-time":"2026-08-13T15:17:11Z","timestamp":1786634231000},"score":1,"resource":{"primary":{"URL":"https:\/\/movementdisorders.onlinelibrary.wiley.com\/doi\/10.1002\/mds.70134"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2025,12,12]]},"references-count":12,"journal-issue":{"issue":"3","published-print":{"date-parts":[[2026,3]]}},"alternative-id":["10.1002\/mds.70134"],"URL":"https:\/\/doi.org\/10.1002\/mds.70134","archive":["Portico"],"relation":{},"ISSN":["0885-3185","1531-8257"],"issn-type":[{"value":"0885-3185","type":"print"},{"value":"1531-8257","type":"electronic"}],"subject":[],"published":{"date-parts":[[2025,12,12]]},"assertion":[{"value":"2025-06-03","order":0,"name":"received","label":"Received","group":{"name":"publication_history","label":"Publication History"}},{"value":"2025-11-07","order":2,"name":"accepted","label":"Accepted","group":{"name":"publication_history","label":"Publication History"}},{"value":"2025-12-12","order":3,"name":"published","label":"Published","group":{"name":"publication_history","label":"Publication History"}}]}}