{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,11,2]],"date-time":"2026-11-02T21:30:23Z","timestamp":1793655023566,"version":"4.5.1"},"reference-count":25,"publisher":"SAGE Publications","issue":"3","license":[{"start":{"date-parts":[[2025,4,3]],"date-time":"2025-04-03T00:00:00Z","timestamp":1743638400000},"content-version":"unspecified","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by-nc\/4.0\/"},{"start":{"date-parts":[[2025,4,3]],"date-time":"2025-04-03T00:00:00Z","timestamp":1743638400000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/journals.sagepub.com\/page\/policies\/text-and-data-mining-license"}],"funder":[{"DOI":"10.13039\/100000864","name":"Michael J. Fox Foundation for Parkinson's Research","doi-asserted-by":"publisher","award":["024438"],"award-info":[{"award-number":["024438"]}],"id":[{"id":"10.13039\/100000864","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["journals.sagepub.com"],"crossmark-restriction":true},"short-container-title":["Journal of Parkinson\u2019s Disease"],"published-print":{"date-parts":[[2025,5]]},"abstract":"<jats:sec>\n                    <jats:title>Background<\/jats:title>\n                    <jats:p>The patient experience of Parkinson's disease (PD) is heterogeneous, with limited prognostic tools to predict individual outcomes, leading to significant uncertainty for people with PD. Under-recognition of both psychosocial and biological drivers of fear and uncertainty in Parkinson's disease (PD) by clinicians may further contribute to patient distress.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Objective<\/jats:title>\n                    <jats:p>The objective of the present study is to investigate fear and uncertainty in people with PD.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>In-depth interviews were conducted with twenty people with PD (11 semi-structured, 9 guided\/prompted). Thematic analysis organized the fears\/uncertainties by topic as well as by contextual factors such as the timing of the fear (e.g., active or anticipatory; at the time of diagnosis or developed subsequent to diagnosis) and the lexicon used to describe it.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>Participants expressed a wide range of fears and uncertainties about their future and quality of life with PD, which shifted with disease progression. Most fears were anticipatory rather than in response to current concerns. Participants reported substantial psychosocial influence from media personalities or family\/friends with PD. Most participants reported that they had not disclosed their fears to their healthcare providers.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusions<\/jats:title>\n                    <jats:p>Clinicians caring for people with PD should be aware of a range of often-unspoken fears and uncertainties, which may carry a substantial psychosocial burden. Open acknowledgement and normalization by clinicians may help patients feel less isolated in their disease.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1177\/1877718x251328565","type":"journal-article","created":{"date-parts":[[2025,4,4]],"date-time":"2025-04-04T03:12:45Z","timestamp":1743736365000},"page":"595-602","update-policy":"https:\/\/doi.org\/10.1177\/sage-journals-update-policy","source":"Crossref","is-referenced-by-count":7,"title":["Fears and uncertainties of people with Parkinson's disease"],"prefix":"10.1177","volume":"15","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-6941-703X","authenticated-orcid":false,"given":"Esme D","family":"Trahair","sequence":"first","affiliation":[{"name":"Department of Neurology, Duke University School of Medicine, Durham, NC, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0009-0008-6399-5486","authenticated-orcid":false,"given":"Darby","family":"Steiger","sequence":"additional","affiliation":[{"name":"SSRS, Glen Mills, PA, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0009-0007-5376-9795","authenticated-orcid":false,"given":"Nashay","family":"Lowe","sequence":"additional","affiliation":[{"name":"SSRS, Glen Mills, PA, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Robyn","family":"Rapoport","sequence":"additional","affiliation":[{"name":"SSRS, Glen Mills, PA, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0009-0007-0727-9066","authenticated-orcid":false,"given":"Caitlin","family":"Kelliher","sequence":"additional","affiliation":[{"name":"The Michael J. Fox Foundation for Parkinson's Research, New York, NY, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-2792-6933","authenticated-orcid":false,"given":"Stephanie","family":"Benvengo","sequence":"additional","affiliation":[{"name":"The Michael J. Fox Foundation for Parkinson's Research, New York, NY, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-8678-7550","authenticated-orcid":false,"given":"Catherine","family":"Kopil","sequence":"additional","affiliation":[{"name":"The Michael J. Fox Foundation for Parkinson's Research, New York, NY, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Lana M","family":"Chahine","sequence":"additional","affiliation":[{"name":"Department of Neurology, University of Pittsburgh School of Medicine, Pittsburgh, PA, 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":"Department of Neurology, University of Toronto, Toronto, ON, Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-4556-0522","authenticated-orcid":false,"given":"Sneha","family":"Mantri","sequence":"additional","affiliation":[{"name":"Department of Neurology, Duke University School of Medicine, Durham, NC, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"179","published-online":{"date-parts":[[2025,4,3]]},"reference":[{"key":"e_1_3_4_2_2","doi-asserted-by":"publisher","DOI":"10.1038\/s41531-023-00593-y"},{"key":"e_1_3_4_3_2","doi-asserted-by":"publisher","DOI":"10.1002\/pon.5921"},{"key":"e_1_3_4_4_2","doi-asserted-by":"publisher","DOI":"10.1093\/nop\/npac067"},{"key":"e_1_3_4_5_2","doi-asserted-by":"publisher","DOI":"10.1080\/13607863.2017.1341468"},{"key":"e_1_3_4_6_2","doi-asserted-by":"publisher","DOI":"10.1186\/s12904-023-01165-w"},{"key":"e_1_3_4_7_2","doi-asserted-by":"publisher","DOI":"10.1016\/S0140-6736(24)01296-0"},{"key":"e_1_3_4_8_2","doi-asserted-by":"publisher","DOI":"10.1155\/2020\/8866386"},{"key":"e_1_3_4_9_2","article-title":"Alleviating stress in Parkinson\u2019s disease: symptomatic treatment, disease modification, or both?","volume":"14","author":"Goltz F","year":"2024","unstructured":"Goltz F, van der Heide A, Helmich RC. Alleviating stress in Parkinson\u2019s disease: symptomatic treatment, disease modification, or both? J Parkinsons Dis 2024; 14: S147\u2013S158.","journal-title":"J Parkinsons Dis"},{"key":"e_1_3_4_10_2","doi-asserted-by":"publisher","DOI":"10.1038\/s41582-024-01047-6"},{"key":"e_1_3_4_11_2","doi-asserted-by":"publisher","DOI":"10.1038\/s41531-023-00452-w"},{"key":"e_1_3_4_12_2","doi-asserted-by":"publisher","DOI":"10.3233\/JPD-223314"},{"key":"e_1_3_4_13_2","doi-asserted-by":"publisher","DOI":"10.3233\/JPD-230305"},{"key":"e_1_3_4_14_2","doi-asserted-by":"publisher","DOI":"10.1080\/02770903.2022.2160343"},{"key":"e_1_3_4_15_2","doi-asserted-by":"publisher","DOI":"10.1002\/mdc3.14163"},{"key":"e_1_3_4_16_2","article-title":"Stemming the tide: the proactive role of allied health therapy in Parkinson\u2019s disease","volume":"14","author":"Rafferty MR","year":"2024","unstructured":"Rafferty MR, Foster ER, Roberts AC, et al. Stemming the tide: the proactive role of allied health therapy in Parkinson\u2019s disease. J Parkinsons Dis 2024; 14: S7\u2013S19.","journal-title":"J Parkinsons Dis"},{"key":"e_1_3_4_17_2","doi-asserted-by":"publisher","DOI":"10.1016\/j.neubiorev.2017.07.011"},{"key":"e_1_3_4_18_2","doi-asserted-by":"publisher","DOI":"10.1007\/s11682-020-00407-2"},{"key":"e_1_3_4_19_2","doi-asserted-by":"publisher","DOI":"10.1186\/s12877-018-0735-1"},{"key":"e_1_3_4_20_2","doi-asserted-by":"publisher","DOI":"10.1002\/mds.27416"},{"key":"e_1_3_4_21_2","doi-asserted-by":"publisher","DOI":"10.1111\/ene.12014"},{"key":"e_1_3_4_22_2","doi-asserted-by":"publisher","DOI":"10.3233\/JPD-225068"},{"key":"e_1_3_4_23_2","doi-asserted-by":"publisher","DOI":"10.3233\/JPD-225083"},{"key":"e_1_3_4_24_2","doi-asserted-by":"publisher","DOI":"10.3390\/medicina59081454"},{"key":"e_1_3_4_25_2","doi-asserted-by":"publisher","DOI":"10.1371\/journal.pone.0225723"},{"key":"e_1_3_4_26_2","doi-asserted-by":"publisher","DOI":"10.3233\/JPD-230257"}],"container-title":["Journal of Parkinson\u2019s Disease"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/journals.sagepub.com\/doi\/pdf\/10.1177\/1877718X251328565","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/journals.sagepub.com\/doi\/full-xml\/10.1177\/1877718X251328565","content-type":"application\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/journals.sagepub.com\/doi\/pdf\/10.1177\/1877718X251328565","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,4,30]],"date-time":"2026-04-30T22:51:22Z","timestamp":1777589482000},"score":1,"resource":{"primary":{"URL":"https:\/\/journals.sagepub.com\/doi\/10.1177\/1877718X251328565"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2025,4,3]]},"references-count":25,"journal-issue":{"issue":"3","published-print":{"date-parts":[[2025,5]]}},"alternative-id":["10.1177\/1877718X251328565"],"URL":"https:\/\/doi.org\/10.1177\/1877718x251328565","relation":{},"ISSN":["1877-7171","1877-718X"],"issn-type":[{"value":"1877-7171","type":"print"},{"value":"1877-718X","type":"electronic"}],"subject":[],"published":{"date-parts":[[2025,4,3]]}}}