{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,10]],"date-time":"2026-10-10T00:57:22Z","timestamp":1791593842057,"version":"4.3.4"},"reference-count":45,"publisher":"Springer Science and Business Media LLC","issue":"2","license":[{"start":{"date-parts":[[2025,1,15]],"date-time":"2025-01-15T00:00:00Z","timestamp":1736899200000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"},{"start":{"date-parts":[[2025,1,15]],"date-time":"2025-01-15T00:00:00Z","timestamp":1736899200000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"}],"funder":[{"DOI":"10.13039\/100000864","name":"Michael J. Fox Foundation for Parkinson's Research","doi-asserted-by":"publisher","award":["MJFF-022743"],"award-info":[{"award-number":["MJFF-022743"]}],"id":[{"id":"10.13039\/100000864","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["link.springer.com"],"crossmark-restriction":false},"short-container-title":["J Neurol"],"published-print":{"date-parts":[[2025,2]]},"abstract":"<jats:title>Abstract<\/jats:title>\n          <jats:sec>\n            <jats:title>Background<\/jats:title>\n            <jats:p>Longitudinal qualitative data on what matters to people with Parkinson\u2019s disease are lacking and needed to guide patient-centered clinical care and development of outcome measures.<\/jats:p>\n          <\/jats:sec>\n          <jats:sec>\n            <jats:title>Objective<\/jats:title>\n            <jats:p>To evaluate change over time in symptoms, impacts, and relevance of digital measures to monitor disease progression in early Parkinson\u2019s.<\/jats:p>\n          <\/jats:sec>\n          <jats:sec>\n            <jats:title>Methods<\/jats:title>\n            <jats:p>In-depth, online symptom mapping interviews were conducted with 33 people with early Parkinson\u2019s at baseline and 1 year later to evaluate (A) symptoms, (B) impacts, and (C) relevance of digital measures to monitor personally relevant symptoms. Maps and transcripts were coded for frequencies, Likert scale rankings (0\u2009=\u2009not present to 4\u2009=\u2009most bothersome), and thematic findings. Wilcoxon Signed Rank test was used to evaluate change over time.<\/jats:p>\n          <\/jats:sec>\n          <jats:sec>\n            <jats:title>Results<\/jats:title>\n            <jats:p>Other than walking and balance, most motor symptoms did not change significantly from baseline to 1 year later. Multiple significant changes were observed in non-motor areas (cognition, speech, sleep, mood, fatigue, pain; <jats:italic>p<\/jats:italic>\u2009&lt;\u20090.05) and functional impacts (mobility, effort to do usual activities, personal comfort; <jats:italic>p<\/jats:italic>\u2009&lt;\u20090.05). Thematic analysis revealed ability to cope with and compensate for <jats:italic>actual<\/jats:italic> or <jats:italic>anticipated<\/jats:italic> symptoms reduced disruptions to well-being and changed how bothersome symptoms were. All digital measures targeted symptoms that were personally important to most participants (&gt;\u200980%).<\/jats:p>\n          <\/jats:sec>\n          <jats:sec>\n            <jats:title>Conclusion<\/jats:title>\n            <jats:p>Non-motor and walking\/balance symptoms changed sooner than other motor symptoms during the course of 1 year. Evaluation of coping and compensatory mechanisms may be essential to understanding symptom bothersomeness at a given point in time. Smartphone and smartwatch digital measures were relevant to personally meaningful symptoms of early PD.<\/jats:p>\n          <\/jats:sec>","DOI":"10.1007\/s00415-024-12789-0","type":"journal-article","created":{"date-parts":[[2025,1,15]],"date-time":"2025-01-15T13:04:44Z","timestamp":1736946284000},"update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":18,"title":["Longitudinal qualitative assessment of meaningful symptoms and relevance of WATCH-PD digital measures for people with early Parkinson\u2019s"],"prefix":"10.1007","volume":"272","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-7858-9183","authenticated-orcid":false,"given":"Jennifer R.","family":"Mammen","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Aaron","family":"Lerner","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Raunak","family":"Al-Rubayie","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Melissa","family":"Kostrzebski","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Diane","family":"Stephenson","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Yuge","family":"Xiao","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Chris","family":"Redmond","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Mirinda","family":"Tyo","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Varun G.","family":"Reddy","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Peggy","family":"Auinger","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"E. Ray","family":"Dorsey","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jamie L.","family":"Adams","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"297","published-online":{"date-parts":[[2025,1,15]]},"reference":[{"key":"12789_CR1","doi-asserted-by":"publisher","first-page":"619","DOI":"10.3233\/JPD-225068","volume":"13","author":"J Mammen","year":"2023","unstructured":"Mammen J, Speck R, Stebbins G, M\u00fcller M, Yang P, Campbell M, Cosman J, Crawford J, Dam T, Hellsten J, Jensen-Roberts S, Kostrzebski M, Simuni T, Ward Barowicz K, Cedarbaum J, Dorsey E, Stephenson D, Adams J (2023) Relative meaningfulness and impacts of symptoms in people with early-stage Parkinson\u2019s disease. J Parkinsons Dis 13:619\u2013632. https:\/\/doi.org\/10.3233\/JPD-225068","journal-title":"J Parkinsons Dis"},{"key":"12789_CR2","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, Barker RA, Blavat G, Brooks W, Burns P, Cano S, Gallagher C, Gosden L, Siu C, Slagle AF, Trenam K, Boroojerdi B, Ratcliffe N, Schroeder K (2022) 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 11:1319\u20131340. https:\/\/doi.org\/10.1007\/s40120-022-00375-3","journal-title":"Neurol Ther"},{"key":"12789_CR3","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 (2010) Parkinson\u2019s disease symptoms: the patient\u2019s perspective. Mov Disord 25:1646\u20131651. https:\/\/doi.org\/10.1002\/mds.23135","journal-title":"Mov Disord"},{"key":"12789_CR4","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, Leddin M, Rodriguez-Esteban R, Chaudhuri KR, Weintraub D, Postuma RB, Martinez-Martin P (2022) A patient-centered conceptual model of symptoms and their impact in early Parkinson\u2019s disease: a qualitative study. J Parkinsons Dis 12:137\u2013151. https:\/\/doi.org\/10.3233\/jpd-202457","journal-title":"J Parkinsons Dis"},{"key":"12789_CR5","doi-asserted-by":"publisher","DOI":"10.21203\/rs.3.rs-4377805\/v1","author":"J Mammen","year":"2024","unstructured":"Mammen J, Adams J, Mangrum R, Xiao Y, Barbosa W, Tyo M, Redmond C, Carter C, Cifelli K, Cifelli R, Maruzo H, Meeker J, Shultz G, Thomas C, Bales C, Davies E, Kopil C, Marras C, Mestre T, Morel T, Simuni T, Stebbins G, Stephenson D (2024) A consensus conceptual model of early Parkinson\u2019s disease. Res Square. https:\/\/doi.org\/10.21203\/rs.3.rs-4377805\/v1","journal-title":"Res Square"},{"key":"12789_CR6","doi-asserted-by":"publisher","first-page":"715","DOI":"10.3233\/JPD-202346","volume":"11","author":"RJ Port","year":"2021","unstructured":"Port RJ, Rumsby M, Brown G, Harrison IF, Amjad A, Bale CJ (2021) People with Parkinson\u2019s disease: what symptoms do they most want to improve and how does this change with disease duration? J Parkinsons Dis 11:715\u2013724. https:\/\/doi.org\/10.3233\/JPD-202346","journal-title":"J Parkinsons Dis"},{"key":"12789_CR7","unstructured":"Mammen J, Tyo M, Adams JL, Bale CJ, Xiao Y (nd) Understanding aspects of Parkinson\u2019s Disease that are most important to treat from the perspective of patients and families"},{"key":"12789_CR8","unstructured":"USDHHS (2022) Patient-focused drug development: methods to identify what is important to patients (Guidance 2). https:\/\/www.fda.gov\/regulatory-information\/search-fda-guidance-documents\/patient-focused-drug-development-methods-identify-what-important-patients"},{"key":"12789_CR9","doi-asserted-by":"crossref","unstructured":"USDHHS (2022) Patient-focused drug development: selecting, developing, or modifying fit-for-purpose clinical outcome assessments (Guidance 3). https:\/\/www.fda.gov\/regulatory-information\/search-fda-guidance-documents\/patient-focused-drug-development-selecting-developing-or-modifying-fit-purpose-clinical-outcome","DOI":"10.1007\/s40271-022-00607-6"},{"key":"12789_CR10","doi-asserted-by":"publisher","first-page":"1927","DOI":"10.1007\/s00415-019-09348-3","volume":"266","author":"A Regnault","year":"2019","unstructured":"Regnault A, Boroojerdi B, Meunier J, Bani M, Morel T, Cano S (2019) Does the MDS-UPDRS provide the precision to assess progression in early Parkinson\u2019s disease? Learnings from the Parkinson\u2019s progression marker initiative cohort. J Neurol 266:1927\u20131936. https:\/\/doi.org\/10.1007\/s00415-019-09348-3","journal-title":"J Neurol"},{"key":"12789_CR11","doi-asserted-by":"publisher","first-page":"585","DOI":"10.1002\/mds.28884","volume":"37","author":"S Zolfaghari","year":"2022","unstructured":"Zolfaghari S, Thomann AE, Lewandowski N, Trundell D, Lipsmeier F, Pagano G, Taylor KI, Postuma RB (2022) Self-report versus clinician examination in early Parkinson\u2019s disease. Mov Disord 37:585\u2013597. https:\/\/doi.org\/10.1002\/mds.28884","journal-title":"Mov Disord"},{"key":"12789_CR12","doi-asserted-by":"publisher","first-page":"56","DOI":"10.1016\/j.parkreldis.2019.09.004","volume":"67","author":"S Mantri","year":"2019","unstructured":"Mantri S, Wood S, Duda JE, Morley JF (2019) Comparing self-reported and objective monitoring of physical activity in Parkinson disease. Parkinsonism Relat Disord 67:56\u201359. https:\/\/doi.org\/10.1016\/j.parkreldis.2019.09.004","journal-title":"Parkinsonism Relat Disord"},{"key":"12789_CR13","doi-asserted-by":"publisher","first-page":"S115","DOI":"10.3233\/JPD-181481","volume":"8","author":"T Foltynie","year":"2018","unstructured":"Foltynie T, Langston JW (2018) Therapies to slow, stop, or reverse Parkinson\u2019s disease. J Parkinsons Dis 8:S115\u2013S121. https:\/\/doi.org\/10.3233\/JPD-181481","journal-title":"J Parkinsons Dis"},{"key":"12789_CR14","doi-asserted-by":"publisher","first-page":"73","DOI":"10.1038\/s41392-023-01353-3","volume":"8","author":"X Dong-Chen","year":"2023","unstructured":"Dong-Chen X, Yong C, Yang X, Chen-Yu S, Li-Hua P (2023) Signaling pathways in Parkinson\u2019s disease: molecular mechanisms and therapeutic interventions. Signal Transduct Target Ther 8:73. https:\/\/doi.org\/10.1038\/s41392-023-01353-3","journal-title":"Signal Transduct Target Ther"},{"key":"12789_CR15","doi-asserted-by":"publisher","first-page":"45","DOI":"10.1038\/s41746-021-00418-3","volume":"4","author":"M Smuck","year":"2021","unstructured":"Smuck M, Odonkor CA, Wilt JK, Schmidt N, Swiernik MA (2021) The emerging clinical role of wearables: factors for successful implementation in healthcare. NPJ Digit Med 4:45. https:\/\/doi.org\/10.1038\/s41746-021-00418-3","journal-title":"NPJ Digit Med"},{"key":"12789_CR16","unstructured":"Dorsey E. Wearable assessments in the clinic and home in PD (WATCH-PD). https:\/\/clinicaltrials.gov\/ct2\/show\/NCT03681015"},{"key":"12789_CR17","doi-asserted-by":"crossref","unstructured":"Adams J (2023) A multicenter study using a smartwatch, smartphone, and wearable sensors to assess early Parkinson\u2019s disease: baseline results of the WATCH-PD Study. Res Square (preprint)","DOI":"10.21203\/rs.3.rs-2289246\/v1"},{"key":"12789_CR18","doi-asserted-by":"publisher","DOI":"10.3233\/JPD-225122","author":"J Mammen","year":"2023","unstructured":"Mammen J, Speck R, Stebbins G, M\u00fcller M, Yang P, Campbell M, Cosman J, Crawford J, Dam T, Hellsten J, Jensen-Roberts S, Kostrzebski M, Simuni T, Ward Barowicz K, Cedarbaum J, Dorsey E, Stephenson D, Adams J (2023) Mapping meaningful symptoms and impacts of disease to digital outcome measures. J Parkinson\u2019s Dis. https:\/\/doi.org\/10.3233\/JPD-225122","journal-title":"J Parkinson\u2019s Dis"},{"key":"12789_CR19","doi-asserted-by":"publisher","first-page":"103208","DOI":"10.1016\/j.jbi.2019.103208","volume":"95","author":"PA Harris","year":"2019","unstructured":"Harris PA, Taylor R, Minor BL, Elliott V, Fernandez M, O\u2019Neal L, McLeod L, Delacqua G, Delacqua F, Kirby J, Duda SN, Consortium RE (2019) The REDCap consortium: building an international community of software platform partners. J Biomed Inform 95:103208. https:\/\/doi.org\/10.1016\/j.jbi.2019.103208","journal-title":"J Biomed Inform"},{"key":"12789_CR20","doi-asserted-by":"publisher","first-page":"377","DOI":"10.1016\/j.jbi.2008.08.010","volume":"42","author":"PA Harris","year":"2009","unstructured":"Harris PA, Taylor R, Thielke R, Payne J, Gonzalez N, Conde JG (2009) Research electronic data capture (REDCap)\u2014a metadata-driven methodology and workflow process for providing translational research informatics support. J Biomed Inform 42:377\u2013381. https:\/\/doi.org\/10.1016\/j.jbi.2008.08.010","journal-title":"J Biomed Inform"},{"key":"12789_CR21","doi-asserted-by":"publisher","first-page":"583","DOI":"10.1002\/nur.21920","volume":"41","author":"JR Mammen","year":"2018","unstructured":"Mammen JR, Mammen CR (2018) Beyond concept analysis: uses of mind mapping software for visual representation, management, and analysis of diverse digital data. Res Nurs Health 41:583\u2013592. https:\/\/doi.org\/10.1002\/nur.21920","journal-title":"Res Nurs Health"},{"key":"12789_CR22","doi-asserted-by":"publisher","first-page":"1277","DOI":"10.1177\/1049732305276687","volume":"15","author":"HF Hsieh","year":"2005","unstructured":"Hsieh HF, Shannon SE (2005) Three approaches to qualitative content analysis. Qual Health Res 15:1277\u20131288. https:\/\/doi.org\/10.1177\/1049732305276687","journal-title":"Qual Health Res"},{"key":"12789_CR23","volume-title":"Qualitative research design: an interactive approach","author":"JA Maxwell","year":"2012","unstructured":"Maxwell JA (2012) Qualitative research design: an interactive approach. Sage, Thousand Oaks"},{"key":"12789_CR24","volume-title":"Stress, appraisal, and coping","author":"RS Lazarus","year":"1984","unstructured":"Lazarus RS, Folkman S (1984) Stress, appraisal, and coping. Springer, New York"},{"key":"12789_CR25","doi-asserted-by":"publisher","first-page":"e036870","DOI":"10.1136\/bmjopen-2020-036870","volume":"10","author":"JD Liebermann","year":"2020","unstructured":"Liebermann JD, Witte OW, Prell T (2020) Association between different coping styles and health-related quality of life in people with Parkinson\u2019s disease: a cross-sectional study. BMJ Open 10:e036870. https:\/\/doi.org\/10.1136\/bmjopen-2020-036870","journal-title":"BMJ Open"},{"key":"12789_CR26","doi-asserted-by":"publisher","DOI":"10.3390\/bs10120190","author":"MH Nilsson","year":"2020","unstructured":"Nilsson MH, Oswald F, Palmqvist S, Slaug B (2020) Coping styles among people with Parkinson\u2019s disease: a three-year follow-up study. Behav Sci (Basel). https:\/\/doi.org\/10.3390\/bs10120190","journal-title":"Behav Sci (Basel)"},{"key":"12789_CR27","doi-asserted-by":"publisher","first-page":"e0243974","DOI":"10.1371\/journal.pone.0243974","volume":"15","author":"C Checa","year":"2020","unstructured":"Checa C, Medina-Perucha L, Munoz MA, Verdu-Rotellar JM, Berenguera A (2020) Living with advanced heart failure: a qualitative study. PLoS ONE 15:e0243974. https:\/\/doi.org\/10.1371\/journal.pone.0243974","journal-title":"PLoS ONE"},{"key":"12789_CR28","doi-asserted-by":"publisher","first-page":"e13192","DOI":"10.1111\/ecc.13192","volume":"29","author":"J Armoogum","year":"2020","unstructured":"Armoogum J, Harcourt D, Foster C, Llewellyn A, McCabe CS (2020) The experience of persistent pain in adult cancer survivors: a qualitative evidence synthesis. Eur J Cancer Care (Engl) 29:e13192. https:\/\/doi.org\/10.1111\/ecc.13192","journal-title":"Eur J Cancer Care (Engl)"},{"key":"12789_CR29","doi-asserted-by":"publisher","first-page":"109876","DOI":"10.1016\/j.diabres.2022.109876","volume":"187","author":"JA Nettleton","year":"2022","unstructured":"Nettleton JA, Burton AE, Povey RC (2022) \u201cNo-one realises what we go through as Type 1s\u201d: a qualitative photo-elicitation study on coping with diabetes. Diabetes Res Clin Pract 187:109876. https:\/\/doi.org\/10.1016\/j.diabres.2022.109876","journal-title":"Diabetes Res Clin Pract"},{"key":"12789_CR30","doi-asserted-by":"publisher","first-page":"e123","DOI":"10.1093\/geront\/gnaa169","volume":"62","author":"S Bannon","year":"2022","unstructured":"Bannon S, Reichman M, Popok P, Wagner J, Gates M, Uppal S, LeFeber L, Wong B, Dickerson BC, Vranceanu AM (2022) In it together: a qualitative meta-synthesis of common and unique psychosocial stressors and adaptive coping strategies of persons with young-onset dementia and their caregivers. Gerontologist 62:e123\u2013e139. https:\/\/doi.org\/10.1093\/geront\/gnaa169","journal-title":"Gerontologist"},{"key":"12789_CR31","unstructured":"Eldred K (2011) Coping with chronic illness: do strategies differ by illness type? Proquest, UNF Graduate Theses and Dissertations"},{"key":"12789_CR32","doi-asserted-by":"publisher","first-page":"343","DOI":"10.1007\/BF01173478","volume":"13","author":"DL Tobin","year":"1989","unstructured":"Tobin DL, Holroyd KA, Reynolds RV, Wigal JK (1989) The hierarchical factor structure of the coping strategies inventory. Cogn Ther Res 13:343\u2013361. https:\/\/doi.org\/10.1007\/BF01173478","journal-title":"Cogn Ther Res"},{"key":"12789_CR33","doi-asserted-by":"publisher","first-page":"103923","DOI":"10.1016\/j.ijnurstu.2021.103923","volume":"118","author":"A Haahr","year":"2021","unstructured":"Haahr A, Groos H, Sorensen D (2021) \u201cStriving for normality\u201d when coping with Parkinson\u2019s disease in everyday life: a metasynthesis. Int J Nurs Stud 118:103923. https:\/\/doi.org\/10.1016\/j.ijnurstu.2021.103923","journal-title":"Int J Nurs Stud"},{"key":"12789_CR34","doi-asserted-by":"publisher","first-page":"e231860","DOI":"10.1001\/jamanetworkopen.2023.1860","volume":"6","author":"A Kulshreshtha","year":"2023","unstructured":"Kulshreshtha A, Alonso A, McClure LA, Hajjar I, Manly JJ, Judd S (2023) Association of stress with cognitive function among older black and white US adults. JAMA Netw Open 6:e231860. https:\/\/doi.org\/10.1001\/jamanetworkopen.2023.1860","journal-title":"JAMA Netw Open"},{"key":"12789_CR35","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 FJR (2022) Adjusting to living with Parkinson\u2019s disease; a meta-ethnography of qualitative research. Disabil Rehabil 44:6949\u20136968. https:\/\/doi.org\/10.1080\/09638288.2021.1981467","journal-title":"Disabil Rehabil"},{"key":"12789_CR36","doi-asserted-by":"publisher","first-page":"363","DOI":"10.1037\/0090-5550.46.4.363","volume":"46","author":"NEJ Sanders-Dewey","year":"2001","unstructured":"Sanders-Dewey NEJ, Mullins LL, Chaney JM (2001) Coping style, perceived uncertainty in illness, and distress in individuals with Parkinson\u2019s disease and their caregivers. Rehabil Psychol 46:363\u2013381. https:\/\/doi.org\/10.1037\/0090-5550.46.4.363","journal-title":"Rehabil Psychol"},{"key":"12789_CR37","doi-asserted-by":"publisher","first-page":"485","DOI":"10.1016\/j.jpsychores.2005.08.019","volume":"60","author":"LO Lundqvist","year":"2006","unstructured":"Lundqvist LO, Ahlstrom G (2006) Psychometric evaluation of the Ways of Coping Questionnaire as applied to clinical and nonclinical groups. J Psychosom Res 60:485\u2013493. https:\/\/doi.org\/10.1016\/j.jpsychores.2005.08.019","journal-title":"J Psychosom Res"},{"key":"12789_CR38","doi-asserted-by":"publisher","first-page":"7128069","DOI":"10.1155\/2018\/7128069","volume":"2018","author":"EJ Corti","year":"2018","unstructured":"Corti EJ, Johnson AR, Gasson N, Bucks RS, Thomas MG, Loftus AM (2018) Factor structure of the ways of coping Questionnaire in Parkinson\u2019s disease. Parkinsons Dis 2018:7128069. https:\/\/doi.org\/10.1155\/2018\/7128069","journal-title":"Parkinsons Dis"},{"key":"12789_CR39","doi-asserted-by":"publisher","first-page":"247","DOI":"10.1002\/gps.2520","volume":"26","author":"RS Bucks","year":"2011","unstructured":"Bucks RS, Cruise KE, Skinner TC, Loftus AM, Barker RA, Thomas MG (2011) Coping processes and health-related quality of life in Parkinson\u2019s disease. Int J Geriatr Psychiatry 26:247\u2013255. https:\/\/doi.org\/10.1002\/gps.2520","journal-title":"Int J Geriatr Psychiatry"},{"key":"12789_CR40","doi-asserted-by":"publisher","first-page":"342","DOI":"10.1037\/emo0000381","volume":"18","author":"AB Neubauer","year":"2018","unstructured":"Neubauer AB, Smyth JM, Sliwinski MJ (2018) When you see it coming: stressor anticipation modulates stress effects on negative affect. Emotion 18:342\u2013354. https:\/\/doi.org\/10.1037\/emo0000381","journal-title":"Emotion"},{"key":"12789_CR41","doi-asserted-by":"publisher","first-page":"S34","DOI":"10.21037\/apm.2020.02.04","volume":"9","author":"S Fox","year":"2020","unstructured":"Fox S, Azman A, Timmons S (2020) Palliative care needs in Parkinson\u2019s disease: focus on anticipatory grief in family carers. Ann Palliat Med 9:S34\u2013S43. https:\/\/doi.org\/10.21037\/apm.2020.02.04","journal-title":"Ann Palliat Med"},{"key":"12789_CR42","doi-asserted-by":"publisher","first-page":"611","DOI":"10.1111\/ejn.14559","volume":"51","author":"SL Martin","year":"2020","unstructured":"Martin SL, Jones AKP, Brown CA, Kobylecki C, Silverdale MA (2020) A neurophysiological investigation of anticipation to pain in Parkinson\u2019s disease. Eur J Neurosci 51:611\u2013627. https:\/\/doi.org\/10.1111\/ejn.14559","journal-title":"Eur J Neurosci"},{"key":"12789_CR43","doi-asserted-by":"publisher","first-page":"e0300465","DOI":"10.1371\/journal.pone.0300465","volume":"19","author":"J Seuthe","year":"2024","unstructured":"Seuthe J, Heinzel A, Hulzinga F, Ginis P, Zeuner KE, Deuschl G, D\u2019Cruz N, Nieuwboer A, Schlenstedt C (2024) Towards a better understanding of anticipatory postural adjustments in people with Parkinson\u2019s disease. PLoS ONE 19:e0300465. https:\/\/doi.org\/10.1371\/journal.pone.0300465","journal-title":"PLoS ONE"},{"key":"12789_CR44","doi-asserted-by":"publisher","first-page":"S63","DOI":"10.21037\/apm.2019.09.10","volume":"9","author":"SR Jordan","year":"2020","unstructured":"Jordan SR, Kluger B, Ayele R, Brungardt A, Hall A, Jones J, Katz M, Miyasaki JM, Lum HD (2020) Optimizing future planning in Parkinson disease: suggestions for a comprehensive roadmap from patients and care partners. Ann Palliat Med 9:S63\u2013S74. https:\/\/doi.org\/10.21037\/apm.2019.09.10","journal-title":"Ann Palliat Med"},{"key":"12789_CR45","doi-asserted-by":"publisher","first-page":"323","DOI":"10.3233\/JPD-225064","volume":"13","author":"A Alonso-Canovas","year":"2023","unstructured":"Alonso-Canovas A, Voeten J, Gifford L, Thomas O, Lees AJ, Bloem BR (2023) The early treatment phase in Parkinson\u2019s disease: not a honeymoon for all, not a honeymoon at all? J Parkinsons Dis 13:323\u2013328. https:\/\/doi.org\/10.3233\/JPD-225064","journal-title":"J Parkinsons Dis"}],"container-title":["Journal of Neurology"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1007\/s00415-024-12789-0.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/article\/10.1007\/s00415-024-12789-0\/fulltext.html","content-type":"text\/html","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1007\/s00415-024-12789-0.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2025,2,15]],"date-time":"2025-02-15T16:41:59Z","timestamp":1739637719000},"score":1,"resource":{"primary":{"URL":"https:\/\/link.springer.com\/10.1007\/s00415-024-12789-0"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2025,1,15]]},"references-count":45,"journal-issue":{"issue":"2","published-print":{"date-parts":[[2025,2]]}},"alternative-id":["12789"],"URL":"https:\/\/doi.org\/10.1007\/s00415-024-12789-0","relation":{},"ISSN":["0340-5354","1432-1459"],"issn-type":[{"value":"0340-5354","type":"print"},{"value":"1432-1459","type":"electronic"}],"subject":[],"published":{"date-parts":[[2025,1,15]]},"assertion":[{"value":"19 September 2024","order":1,"name":"received","label":"Received","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"7 October 2024","order":2,"name":"revised","label":"Revised","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"8 October 2024","order":3,"name":"accepted","label":"Accepted","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"15 January 2025","order":4,"name":"first_online","label":"First Online","group":{"name":"ArticleHistory","label":"Article History"}},{"order":1,"name":"Ethics","group":{"name":"EthicsHeading","label":"Declarations"}},{"value":"ERD has ownership interests in Included Health, Mediflix, SemCap, Synapticure. He has received Honoraria from Adivo Associates France, American Neurological Association, Elsevier, HMP Education, International Parkinson and Movement Disorder Society, Massachusetts Medical Society, Michael J. Fox Foundation, National Institutes of Health, National Multiple Sclerosis Society, Northwestern University, Patient-Centered Outcomes Research Institute, Philadelphia Neurological Society, Stanford University, Sutter Health, Texas Neurological Society, University of Toronto, He has consulted for Abbott, Abbvie, Acadia, Acorda Therapeutics, Advarra, Biogen, Biohaven Pharmaceuticals, BioSensics, Boehringer Ingelheim, Caraway Therapeutics, Cerevance, CuraSen, DConsult2, Denali Therapeutics, Eli Lilly, Genentech, Health & Wellness Partners, HMP Education, Kairos Cinema, LLC (PBS), Karger, KOL groups, Life Sciences Consultant, Mediflix, Medrhythms, Merck, Mitsubishi Tanabe Pharma America, Inc., MJH Holdings, NACCME, Novartis, Otsuka, Praxis Medicine, Sanofi, Seelos Therapeutics, Spark Therapeutics, Springer Healthcare, Theravance Biopharmaceuticals, WebMD. He has received Grant funding from Averitas Pharma, Biogen, Burroughs Wellcome Fund, Michael J. Fox Foundation, National Institutes of Health, Pfizer, Photopharmics, Roche, Safra Foundation. JLA has received research support from the Michael J. Fox Foundation for Parkinson\u2019s Research, Critical Path for Parkinson\u2019s, NIH\/NINDS, Biogen, the Huntington Study Group, and PhotoPharmics; received compensation as a consultant\/steering committee\/advisory board member from the Huntington Study Group, the Parkinson Study Group, AbbVie, VisualDx, BioSensics, Sana Biotechnology, Neuron23, Lundbeck, Biohaven, and the Michael J. Fox Foundation for Parkinson\u2019s Research; received honoraria for speaking from the Huntington Study Group, the Parkinson Study Group, and American Neurological Association. JRM has consulted for and\/or received research support from The Michael J Fox Foundation for Parkinson\u2019s Research, Critical Path for Parkinson\u2019s, National Institutes of Health\/NINR, Sigma Theta Tau International, and Lundbeck. The following authors (MK, AL, RA, VR, DS YX, PA, MT) have no conflict of interest to disclose.","order":2,"name":"Ethics","group":{"name":"EthicsHeading","label":"Conflicts of interest"}},{"value":"This study used COREQ criteria to guide reporting of qualitative findings.","order":3,"name":"Ethics","group":{"name":"EthicsHeading","label":"Quality in qualitative research statement"}},{"value":"IRB approval for all study procedure was provided by University of Rochester (IRB#00006429) and University of Massachusetts, Dartmouth (IRB#23.044). Electronic informed consent was obtained prior to data collection, and study procedures were conducted in accordance with the Declaration of Helsinki. Citation: (2013) World Medical Association Declaration of Helsinki ethical principles for medical research involving human subjects. JAMA: Journal of the American Medical Association 310, 2191-2194.","order":4,"name":"Ethics","group":{"name":"EthicsHeading","label":"Ethical standard"}}],"article-number":"114"}}