{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,8,25]],"date-time":"2026-08-25T21:28:14Z","timestamp":1787693294555,"version":"build-2784847793"},"reference-count":30,"publisher":"Wiley","issue":"11","license":[{"start":{"date-parts":[[2024,9,9]],"date-time":"2024-09-09T00:00:00Z","timestamp":1725840000000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"content-domain":{"domain":["movementdisorders.onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Movement Disord Clin Pract"],"published-print":{"date-parts":[[2024,11]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec><jats:title>Background<\/jats:title><jats:p>Patient\u2010centered care for persons with Parkinson's disease (PwPD) is associated with positive outcomes, but is lacking in current healthcare systems.<\/jats:p><\/jats:sec><jats:sec><jats:title>Objective<\/jats:title><jats:p>In this qualitative study, we solicited advice from PwPD to medical professionals, family members\/friends, and newly\u2010diagnosed PwPD.<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>Through an online survey, 275 PwPD answered open\u2010ended questions asking for their advice. Responses were analyzed using content analysis. Interrater reliability was 94.5%.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>Three qualitative themes were identified. First, participants advised enhancing care and communication, with healthcare professionals balancing clinical constraints with compassion, and family\/friends balancing support with appreciating autonomy of PwPD. The second theme was empowering PwPD through increasing their knowledge of the disease and care options. The third reflected the importance of focusing on well\u2010being and connection.<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusion<\/jats:title><jats:p>The results highlight several gaps in meeting the needs of PwPD in healthcare settings and personal relationships, underscoring the importance of integrating their perspectives in shaping approaches to care.<\/jats:p><\/jats:sec>","DOI":"10.1002\/mdc3.14209","type":"journal-article","created":{"date-parts":[[2024,9,9]],"date-time":"2024-09-09T06:16:49Z","timestamp":1725862609000},"page":"1427-1433","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":4,"title":["We Hope You're Listening: Qualitative Study of Advice Given by Individuals with Parkinson's Disease"],"prefix":"10.1002","volume":"11","author":[{"given":"Shraddha B.","family":"Kinger","sequence":"first","affiliation":[{"name":"Department of Psychological and Brain Sciences Boston University  Boston Massachusetts USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jacqueline","family":"Moran","sequence":"additional","affiliation":[{"name":"Department of Psychological and Brain Sciences Boston University  Boston Massachusetts USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Amber","family":"McLarin","sequence":"additional","affiliation":[{"name":"Department of Psychological and Brain Sciences Boston University  Boston Massachusetts USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Joshua T.","family":"Fox\u2010Fuller","sequence":"additional","affiliation":[{"name":"Department of Psychological and Brain Sciences Boston University  Boston Massachusetts USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Robert D.","family":"Salazar","sequence":"additional","affiliation":[{"name":"Department of Psychological and Brain Sciences Boston University  Boston Massachusetts USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Monica L.","family":"Gordillo","sequence":"additional","affiliation":[{"name":"Department of Psychological and Brain Sciences Boston University  Boston Massachusetts USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Kristin A.","family":"Long","sequence":"additional","affiliation":[{"name":"Department of Psychological and Brain Sciences Boston University  Boston Massachusetts USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-5699-6204","authenticated-orcid":false,"given":"Alice","family":"Cronin\u2010Golomb","sequence":"additional","affiliation":[{"name":"Department of Psychological and Brain Sciences Boston University  Boston Massachusetts USA"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2024,9,9]]},"reference":[{"key":"e_1_2_9_2_1","volume-title":"Crossing the Quality Chasm: A New Health System for the 21st Century","author":"Institute of Medicine (US). Committee on Quality of Health Care in America","year":"2001"},{"issue":"9","key":"e_1_2_9_3_1","first-page":"796","article-title":"The impact of patient\u2010centered care on outcomes","volume":"49","author":"Stewart M","year":"2000","journal-title":"J Fam Pract"},{"key":"e_1_2_9_4_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.ijnurstu.2018.07.006"},{"key":"e_1_2_9_5_1","doi-asserted-by":"publisher","DOI":"10.1007\/s00415-018-8761-7"},{"key":"e_1_2_9_6_1","doi-asserted-by":"publisher","DOI":"10.1212\/WNL.0000000000007324"},{"key":"e_1_2_9_7_1","doi-asserted-by":"publisher","DOI":"10.1136\/bmjopen-2015-010091"},{"key":"e_1_2_9_8_1","doi-asserted-by":"publisher","DOI":"10.1016\/S0738-3991(99)00087-7"},{"key":"e_1_2_9_9_1","doi-asserted-by":"publisher","DOI":"10.1111\/ene.12544"},{"key":"e_1_2_9_10_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.parkreldis.2011.02.012"},{"key":"e_1_2_9_11_1","doi-asserted-by":"publisher","DOI":"10.1002\/mds.20393"},{"key":"e_1_2_9_12_1","doi-asserted-by":"publisher","DOI":"10.1007\/s00415-015-7877-2"},{"key":"e_1_2_9_13_1","doi-asserted-by":"publisher","DOI":"10.1155\/2014\/613592"},{"key":"e_1_2_9_14_1","doi-asserted-by":"publisher","DOI":"10.1589\/jpts.28.541"},{"key":"e_1_2_9_15_1","doi-asserted-by":"publisher","DOI":"10.3233\/JPD-202107"},{"key":"e_1_2_9_16_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.pec.2013.02.002"},{"key":"e_1_2_9_17_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.chb.2011.10.022"},{"key":"e_1_2_9_18_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.parkreldis.2020.02.013"},{"key":"e_1_2_9_19_1","doi-asserted-by":"publisher","DOI":"10.1136\/gpsych-2021-100653"},{"key":"e_1_2_9_20_1","doi-asserted-by":"publisher","DOI":"10.1177\/1049732305276687"},{"key":"e_1_2_9_21_1","doi-asserted-by":"publisher","DOI":"10.1111\/hex.12497"},{"key":"e_1_2_9_22_1","doi-asserted-by":"publisher","DOI":"10.3233\/JPD-181431"},{"key":"e_1_2_9_23_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.parkreldis.2023.105926"},{"key":"e_1_2_9_24_1","doi-asserted-by":"publisher","DOI":"10.1177\/08919887231164358"},{"key":"e_1_2_9_25_1","unstructured":"If I Knew Then What I Know Now: The Michael J Fox Foundation Patient Council's Guide for People Newly Diagnosed with Parkinson's;(2020). Accessed at:https:\/\/www.michaeljfox.org\/sites\/default\/files\/media\/document\/Guide%20for%20newly%20diagnosed_FINAL_5.20.20.pdf."},{"key":"e_1_2_9_26_1","doi-asserted-by":"publisher","DOI":"10.1001\/jamaneurol.2013.5798"},{"key":"e_1_2_9_27_1","doi-asserted-by":"publisher","DOI":"10.1159\/000324935"},{"key":"e_1_2_9_28_1","doi-asserted-by":"publisher","DOI":"10.1002\/mds.22557"},{"key":"e_1_2_9_29_1","doi-asserted-by":"publisher","DOI":"10.1007\/s10823-014-9233-x"},{"key":"e_1_2_9_30_1","doi-asserted-by":"publisher","DOI":"10.1002\/mds.28921"},{"key":"e_1_2_9_31_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.parkreldis.2013.04.022"}],"container-title":["Movement Disorders Clinical Practice"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/movementdisorders.onlinelibrary.wiley.com\/doi\/pdf\/10.1002\/mdc3.14209","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2025,10,20]],"date-time":"2025-10-20T13:29:51Z","timestamp":1760966991000},"score":1,"resource":{"primary":{"URL":"https:\/\/movementdisorders.onlinelibrary.wiley.com\/doi\/10.1002\/mdc3.14209"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2024,9,9]]},"references-count":30,"journal-issue":{"issue":"11","published-print":{"date-parts":[[2024,11]]}},"alternative-id":["10.1002\/mdc3.14209"],"URL":"https:\/\/doi.org\/10.1002\/mdc3.14209","archive":["Portico"],"relation":{},"ISSN":["2330-1619","2330-1619"],"issn-type":[{"value":"2330-1619","type":"print"},{"value":"2330-1619","type":"electronic"}],"subject":[],"published":{"date-parts":[[2024,9,9]]},"assertion":[{"value":"2024-03-07","order":0,"name":"received","label":"Received","group":{"name":"publication_history","label":"Publication History"}},{"value":"2024-08-19","order":2,"name":"accepted","label":"Accepted","group":{"name":"publication_history","label":"Publication History"}},{"value":"2024-09-09","order":3,"name":"published","label":"Published","group":{"name":"publication_history","label":"Publication History"}}]}}