{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,7,8]],"date-time":"2026-07-08T15:20:25Z","timestamp":1783524025639,"version":"3.55.0"},"reference-count":39,"publisher":"Springer Science and Business Media LLC","issue":"4","license":[{"start":{"date-parts":[[2024,6,12]],"date-time":"2024-06-12T00:00:00Z","timestamp":1718150400000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by-nc\/4.0"},{"start":{"date-parts":[[2024,6,12]],"date-time":"2024-06-12T00:00:00Z","timestamp":1718150400000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by-nc\/4.0"}],"funder":[{"DOI":"10.13039\/100004336","name":"Novartis","doi-asserted-by":"publisher","id":[{"id":"10.13039\/100004336","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["link.springer.com"],"crossmark-restriction":false},"short-container-title":["Neurol Ther"],"published-print":{"date-parts":[[2024,8]]},"DOI":"10.1007\/s40120-024-00632-7","type":"journal-article","created":{"date-parts":[[2024,6,12]],"date-time":"2024-06-12T15:01:55Z","timestamp":1718204515000},"page":"1219-1235","update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":1,"title":["An Ethnographic Study of Patient Life Experience in Early-Stage Parkinson\u2019s Disease in the United States and Germany"],"prefix":"10.1007","volume":"13","author":[{"ORCID":"https:\/\/orcid.org\/0009-0004-7840-6251","authenticated-orcid":false,"given":"Todd","family":"Carmody","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-9666-6293","authenticated-orcid":false,"given":"Rebekah","family":"Park","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Elisabeth","family":"Bennett","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Emily","family":"Kuret","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Beyza","family":"Klein","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"\u00c0ngels","family":"Costa","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Simon","family":"Messner","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Amelia","family":"Hursey","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"297","published-online":{"date-parts":[[2024,6,12]]},"reference":[{"key":"632_CR1","unstructured":"World Health Organization. Parkinson disease. 2023. https:\/\/www.who.int\/news-room\/fact-sheets\/detail\/parkinson-disease. Accessed 4 Jan 2024."},{"key":"632_CR2","doi-asserted-by":"publisher","first-page":"368","DOI":"10.1136\/jnnp.2007.131045","volume":"79","author":"J Jankovic","year":"2008","unstructured":"Jankovic J. Parkinson\u2019s disease: clinical features and diagnosis. J Neurol Neurosurg Psychiatry. 2008;79:368\u201376.","journal-title":"J Neurol Neurosurg Psychiatry"},{"issue":"1","key":"632_CR3","doi-asserted-by":"crossref","first-page":"238146832110213","DOI":"10.1177\/23814683211021380","volume":"6","author":"HL Benz","year":"2021","unstructured":"Benz HL, Caldwell B, Ruiz JP, et al. Patient-centered identification of meaningful regulatory endpoints for medical devices to treat Parkinson\u2019s disease. MDM Policy Pract. 2021;6(1):23814683211021380.","journal-title":"MDM Policy Pract"},{"issue":"23","key":"632_CR4","doi-asserted-by":"publisher","first-page":"6949","DOI":"10.1080\/09638288.2021.1981467","volume":"44","author":"G Wieringa","year":"2022","unstructured":"Wieringa G, Dale M, Eccles FJ. Adjusting to living with Parkinson\u2019s disease; a meta-ethnography of qualitative research. Disabil Rehabil. 2022;44(23):6949\u201368.","journal-title":"Disabil Rehabil"},{"issue":"1","key":"632_CR5","volume":"15","author":"N Al-Khammash","year":"2023","unstructured":"Al-Khammash N, Al-Jabri N, Albishi A, et al. Quality of life in patients with Parkinson\u2019s disease: a cross-sectional study. Cureus. 2023;15(1):e33989.","journal-title":"Cureus"},{"issue":"5","key":"632_CR6","doi-asserted-by":"publisher","first-page":"452","DOI":"10.1016\/S1474-4422(20)30036-3","volume":"19","author":"RM de Bie","year":"2020","unstructured":"de Bie RM, Clarke CE, Espay AJ, Fox SH, Lang AE. Initiation of pharmacological therapy in Parkinson\u2019s disease: when, why, and how. Lancet Neurol. 2020;19(5):452\u201361.","journal-title":"Lancet Neurol"},{"issue":"4","key":"632_CR7","doi-asserted-by":"publisher","first-page":"e393","DOI":"10.1212\/WNL.0000000000009946","volume":"95","author":"ML Hacker","year":"2020","unstructured":"Hacker ML, Turchan M, Heusinkveld LE, et al. Deep brain stimulation in early-stage Parkinson disease: five-year outcomes. Neurology. 2020;95(4):e393\u2013401.","journal-title":"Neurology"},{"key":"632_CR8","first-page":"2020","volume":"8","author":"HY Choi","year":"2020","unstructured":"Choi HY, Cho KH, Jin C, et al. Exercise therapies for Parkinson\u2019s disease: a systematic review and meta-analysis. Parkinsons Dis. 2020;8:2020.","journal-title":"Parkinsons Dis"},{"issue":"14","key":"632_CR9","doi-asserted-by":"publisher","DOI":"10.3389\/fnagi.2022.810860","volume":"28","author":"Z Mari","year":"2022","unstructured":"Mari Z, Mestre TA. The disease modification conundrum in Parkinson\u2019s disease: failures and hopes. Front Aging Neurosci. 2022;28(14):810860.","journal-title":"Front Aging Neurosci"},{"issue":"3","key":"632_CR10","doi-asserted-by":"publisher","first-page":"1319","DOI":"10.1007\/s40120-022-00375-3","volume":"11","author":"T Morel","year":"2022","unstructured":"Morel T, Cleanthous S, Andrejack J, et al. Patient experience in early-stage Parkinson\u2019s disease: using a mixed methods analysis to identify which concepts are cardinal for clinical trial outcome assessment. Neurol Ther. 2022;11(3):1319\u201340.","journal-title":"Neurol Ther"},{"issue":"11","key":"632_CR11","doi-asserted-by":"publisher","DOI":"10.1172\/JCI150252","volume":"131","author":"K Kieburtz","year":"2021","unstructured":"Kieburtz K, Dorsey ER. Parkinson disease risks: correctly identifying environmental factors for a chronic disease. J Clin Investig. 2021;131(11):e150252.","journal-title":"J Clin Investig"},{"issue":"9","key":"632_CR12","doi-asserted-by":"publisher","first-page":"628","DOI":"10.3389\/fneur.2018.00628","volume":"3","author":"LE Heusinkveld","year":"2018","unstructured":"Heusinkveld LE, Hacker ML, Turchan M, Davis TL, Charles D. Impact of tremor on patients with early stage Parkinson\u2019s disease. Front Neurol. 2018;3(9):628.","journal-title":"Front Neurol"},{"issue":"11","key":"632_CR13","doi-asserted-by":"publisher","first-page":"1646","DOI":"10.1002\/mds.23135","volume":"25","author":"M Politis","year":"2010","unstructured":"Politis M, Wu K, Molloy S, Bain PG, Chaudhuri KR, Piccini P. Parkinson\u2019s disease symptoms: the patient\u2019s perspective. Mov Disord. 2010;25(11):1646\u201351.","journal-title":"Mov Disord"},{"issue":"1","key":"632_CR14","doi-asserted-by":"publisher","first-page":"40","DOI":"10.1186\/s41687-023-00577-9","volume":"7","author":"T Morel","year":"2023","unstructured":"Morel T, Cleanthous S, Andrejack J, et al. Development and early qualitative evidence of two novel patient-reported outcome instruments to assess daily functioning in people with early-stage Parkinson\u2019s. J Patient Rep Outcomes. 2023;7(1):40.","journal-title":"J Patient Rep Outcomes"},{"issue":"1","key":"632_CR15","doi-asserted-by":"publisher","first-page":"137","DOI":"10.3233\/JPD-202457","volume":"12","author":"H Staunton","year":"2022","unstructured":"Staunton H, Kelly K, Newton L, et al. A patient-centered conceptual model of symptoms and their impact in early Parkinson\u2019s disease: a qualitative study. J Parkinsons Dis. 2022;12(1):137\u201351.","journal-title":"J Parkinsons Dis"},{"key":"632_CR16","unstructured":"Food and Drug Administration. Patient-Focused Drug Development: Methods to Identify What Is Important to Patients. Guidance for Industry, Food and Drug Administration Staff, and Other Stakeholders. 2022. https:\/\/www.fda.gov\/regulatory-information\/search-fda-guidance-documents\/patient-focused-drug-development-methods-identify-what-important-patients. Accessed 4 Jan 2024."},{"key":"632_CR17","volume-title":"The sociology of health and illness","author":"S Nettleton","year":"2020","unstructured":"Nettleton S. The sociology of health and illness. Hoboken: Wiley; 2020."},{"issue":"8","key":"632_CR18","doi-asserted-by":"publisher","first-page":"652","DOI":"10.1177\/1744987120927206","volume":"25","author":"S Campbell","year":"2020","unstructured":"Campbell S, Greenwood M, Prior S, et al. Purposive sampling: complex or simple? Research case examples. J Res Nurs. 2020;25(8):652\u201361.","journal-title":"J Res Nurs"},{"key":"632_CR19","volume-title":"Learning from strangers: the art and method of qualitative interview studies","author":"RS Weiss","year":"1995","unstructured":"Weiss RS. Learning from strangers: the art and method of qualitative interview studies. New York: Simon and Schuster; 1995."},{"issue":"8","key":"632_CR20","doi-asserted-by":"publisher","first-page":"475","DOI":"10.1007\/s11910-022-01212-8","volume":"22","author":"J Adrissi","year":"2022","unstructured":"Adrissi J, Fleisher J. Moving the dial toward equity in Parkinson\u2019s disease clinical research: a review of current literature and future directions in diversifying PD clinical trial participation. Curr Neurol Neurosci Rep. 2022;22(8):475\u201383.","journal-title":"Curr Neurol Neurosci Rep"},{"key":"632_CR21","doi-asserted-by":"publisher","DOI":"10.4135\/9781483328294","volume-title":"Ethnography in nursing research","author":"JM Roper","year":"2000","unstructured":"Roper JM, Shapira J. Ethnography in nursing research. Thousand Oaks: Sage; 2000."},{"key":"632_CR22","doi-asserted-by":"publisher","DOI":"10.4324\/9781315146027","volume-title":"Ethnography: principles in practice","author":"M Hammersley","year":"2019","unstructured":"Hammersley M, Atkinson P. Ethnography: principles in practice. London: Routledge; 2019."},{"issue":"11","key":"632_CR23","doi-asserted-by":"publisher","first-page":"1459","DOI":"10.1177\/1049732310379116","volume":"20","author":"JM Morse","year":"2010","unstructured":"Morse JM. How different is qualitative health research from qualitative research? Do we have a subdiscipline? Qual Health Res. 2010;20(11):1459\u201364.","journal-title":"Qual Health Res"},{"key":"632_CR24","first-page":"473","volume-title":"Handbook of applied social research methods","author":"DM Fetterman","year":"1998","unstructured":"Fetterman DM. Ethnography. In: Bickman L, Rog DJ, editors. Handbook of applied social research methods. Thousand Oaks: Sage; 1998. p. 473\u2013504."},{"issue":"4","key":"632_CR25","doi-asserted-by":"publisher","first-page":"36","DOI":"10.7748\/nr2013.03.20.4.36.e305","volume":"20","author":"EV Cruz","year":"2013","unstructured":"Cruz EV, Higginbottom G. The use of focused ethnography in nursing research. Nurse Res. 2013;20(4):36\u201343.","journal-title":"Nurse Res"},{"issue":"4","key":"632_CR26","doi-asserted-by":"publisher","first-page":"547","DOI":"10.1177\/1049732305285972","volume":"16","author":"D Walker","year":"2006","unstructured":"Walker D, Myrick F. Grounded theory: an exploration of process and procedure. Qual Health Res. 2006;16(4):547\u201359.","journal-title":"Qual Health Res"},{"issue":"4","key":"632_CR27","doi-asserted-by":"publisher","first-page":"436","DOI":"10.2307\/798843","volume":"12","author":"BG Glaser","year":"1965","unstructured":"Glaser BG. The constant comparative method of qualitative analysis. Soc Probl. 1965;12(4):436\u201345.","journal-title":"Soc Probl"},{"key":"632_CR28","unstructured":"Parkinson\u2019s Resource Organization. The five stages\u2014popular acronym DABDA. 2017. https:\/\/www.parkinsonsresource.org\/news\/articles\/the-five-stages-popular-acronym-dabda\/ Accessed 4 Jan 2024."},{"issue":"8","key":"632_CR29","doi-asserted-by":"publisher","first-page":"1200","DOI":"10.1002\/mds.22557","volume":"24","author":"N Dahodwala","year":"2009","unstructured":"Dahodwala N, Siderowf A, Xie M, Noll E, Stern M, Mandell DS. Racial differences in the diagnosis of Parkinson\u2019s disease. Mov Disord. 2009;24(8):1200\u20135.","journal-title":"Mov Disord"},{"issue":"1","key":"632_CR30","doi-asserted-by":"publisher","first-page":"106","DOI":"10.1038\/s41531-023-00549-2","volume":"9","author":"S Harris","year":"2023","unstructured":"Harris S, Narayanan NS, Tranel D. Does black v.s white race affect practitioners\u2019 appraisal of Parkinson\u2019s disease? npj Parkinsons Dis. 2023;9(1):106.","journal-title":"npj Parkinsons Dis"},{"key":"632_CR31","volume-title":"Social capital","author":"D Halpern","year":"2005","unstructured":"Halpern D. Social capital. Cambridge: Polity; 2005."},{"key":"632_CR32","first-page":"1","volume":"8","author":"T Schmitt","year":"2023","unstructured":"Schmitt T. The effects of federalism, corporatism and legislative power on health system transformation in Germany. German Polit. 2023;8:1\u201325.","journal-title":"German Polit"},{"key":"632_CR33","unstructured":"Parkinson Council. Community Spotlight. 2024. https:\/\/theparkinsoncouncil.org\/community-spotlight. Accessed 4 Mar 2024."},{"issue":"7466","key":"632_CR34","doi-asserted-by":"publisher","first-page":"611","DOI":"10.1136\/bmj.329.7466.611","volume":"329","author":"MG Baker","year":"2004","unstructured":"Baker MG, Graham L. The journey: Parkinson\u2019s disease. BMJ. 2004;329(7466):611\u20134.","journal-title":"BMJ"},{"issue":"6","key":"632_CR35","doi-asserted-by":"publisher","first-page":"1874","DOI":"10.3390\/jcm9061874","volume":"9","author":"E Hartelt","year":"2020","unstructured":"Hartelt E, Scherbaum R, Kinkel M, Gold R, Muhlack S, T\u00f6nges L. Parkinson\u2019s disease multimodal complex treatment (PD-MCT): analysis of therapeutic effects and predictors for improvement. J Clin Med. 2020;9(6):1874.","journal-title":"J Clin Med"},{"key":"632_CR36","volume-title":"Help! I Have Parkinson\u2019s disease","author":"M Mumma","year":"2021","unstructured":"Mumma M, Dewey RB Jr. Help! I Have Parkinson\u2019s disease. Wapwallopen: Shepherd; 2021."},{"issue":"20","key":"632_CR37","doi-asserted-by":"publisher","first-page":"6034","DOI":"10.1080\/09638288.2021.1963854","volume":"44","author":"D Larson","year":"2022","unstructured":"Larson D, Yeh C, Rafferty M, Bega D. High satisfaction and improved quality of life with Rock Steady Boxing in Parkinson\u2019s disease: results of a large-scale survey. Disabil Rehabil. 2022;44(20):6034\u201341.","journal-title":"Disabil Rehabil"},{"issue":"4","key":"632_CR38","doi-asserted-by":"publisher","first-page":"650","DOI":"10.1080\/13607863.2020.1720599","volume":"25","author":"JY Irons","year":"2021","unstructured":"Irons JY, Hancox G, Vella-Burrows T, et al. Group singing improves quality of life for people with Parkinson\u2019s: an international study. Aging Ment Health. 2021;25(4):650\u20136.","journal-title":"Aging Ment Health"},{"issue":"8","key":"632_CR39","doi-asserted-by":"publisher","first-page":"1006","DOI":"10.1177\/1049732307305199","volume":"17","author":"SD Lambert","year":"2007","unstructured":"Lambert SD, Loiselle CG. Health information-seeking behavior. Qual Health Res. 2007;17(8):1006\u201319.","journal-title":"Qual Health Res"}],"container-title":["Neurology and Therapy"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1007\/s40120-024-00632-7.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/article\/10.1007\/s40120-024-00632-7\/fulltext.html","content-type":"text\/html","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1007\/s40120-024-00632-7.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2024,7,22]],"date-time":"2024-07-22T06:30:48Z","timestamp":1721629848000},"score":1,"resource":{"primary":{"URL":"https:\/\/link.springer.com\/10.1007\/s40120-024-00632-7"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2024,6,12]]},"references-count":39,"journal-issue":{"issue":"4","published-print":{"date-parts":[[2024,8]]}},"alternative-id":["632"],"URL":"https:\/\/doi.org\/10.1007\/s40120-024-00632-7","relation":{},"ISSN":["2193-8253","2193-6536"],"issn-type":[{"value":"2193-8253","type":"print"},{"value":"2193-6536","type":"electronic"}],"subject":[],"published":{"date-parts":[[2024,6,12]]},"assertion":[{"value":"22 March 2024","order":1,"name":"received","label":"Received","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"9 May 2024","order":2,"name":"accepted","label":"Accepted","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"12 June 2024","order":3,"name":"first_online","label":"First Online","group":{"name":"ArticleHistory","label":"Article History"}},{"order":1,"name":"Ethics","group":{"name":"EthicsHeading","label":"Declarations"}},{"value":"Todd Carmody, Rebekah Park, Elisabeth Bennett, and Emily Kuret are employees of Gemic who provided research and analysis services to Novartis Pharma. Beyza Klein, \u00c0ngels Costa, and Simon Messner are employees and shareholders of Novartis Pharma. Amelia Hursey (Parkinson\u2019s Europe) is a staff expert in patient engagement\/involvement in research.","order":2,"name":"Ethics","group":{"name":"EthicsHeading","label":"Conflict of Interest"}},{"value":"The study received ethics approval for the USA and Germany from SolutionsIRB (protocol 2023-Nov-0165), and participants were required to complete consent forms before beginning the interview or survey. The study was performed in accordance with the Helsinki Declaration of 1964 and its later amendments. All researchers received ethics certification for work with human subjects in accordance with the Collaborative Institutional Training Initiative (CITI Program) or the Tri-Council Policy Statement (TCPS).","order":3,"name":"Ethics","group":{"name":"EthicsHeading","label":"Ethical Approval"}}]}}