{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,6,8]],"date-time":"2026-06-08T14:55:09Z","timestamp":1780930509444,"version":"3.54.1"},"reference-count":36,"publisher":"Wiley","issue":"5","license":[{"start":{"date-parts":[[2025,12,3]],"date-time":"2025-12-03T00:00:00Z","timestamp":1764720000000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by-nc-nd\/4.0\/"},{"start":{"date-parts":[[2025,12,3]],"date-time":"2025-12-03T00:00:00Z","timestamp":1764720000000},"content-version":"tdm","delay-in-days":0,"URL":"http:\/\/doi.wiley.com\/10.1002\/tdm_license_1.1"}],"content-domain":{"domain":["movementdisorders.onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Movement Disord Clin Pract"],"published-print":{"date-parts":[[2026,5]]},"abstract":"<jats:title>Abstract<\/jats:title>\n                  <jats:sec>\n                    <jats:title>Background<\/jats:title>\n                    <jats:p>Parkinson's disease and atypical parkinsonism are characterized by motor and non\u2010motor symptoms. As the disease advances, planning for end\u2010of\u2010life (EoL) care becomes increasingly important. However, consensus\u2010based European guidelines for advance care planning and documentation of EoL care preferences for parkinsonism are lacking. Understanding current documentation practices for EoL care across Europe is an essential first step towards formulating such guidelines.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Objectives<\/jats:title>\n                    <jats:p>Provide an overview of the status of EoL care documentation in selected regions of Austria, Estonia, Germany, Greece, Italy and Sweden.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>Individuals diagnosed with moderate to severe parkinsonism, participating in the PD_Pal trial were enrolled. We reviewed participants\u2019 electronic health records (EHRs) and other documentation (eg, advance directives kept at home). A questionnaire was used to extract information on documented EoL care preferences.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>One hundred eighty nine participants were included (n\u2009=\u2009182 Parkinson's disease; n\u2009=\u20097 atypical parkinsonism). Documented EoL care preferences were identified in 70% of the participants in Germany, 21% in Austria, 17% in Sweden, 7% in Greece, 3% in Italy, and 0% in Estonia. Participants more frequently documented their EoL preferences in advance directives than in EHRs. The content of the documentation was largely general, with limited attention to parkinsonism\u2010specific issues.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusions<\/jats:title>\n                    <jats:p>We found considerable variability in the presence of EoL care documentation across European regions. Public awareness and availability of advance directive templates likely contributed to the higher percentage of German participants with advance directives. These should be considered as best practices for enabling individuals with parkinsonism to document their preferences and receive care aligned with them.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1002\/mdc3.70467","type":"journal-article","created":{"date-parts":[[2025,12,3]],"date-time":"2025-12-03T10:57:52Z","timestamp":1764759472000},"page":"1217-1227","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":1,"title":["Documented End\u2010of\u2010Life Preferences of People With Parkinson's Disease or Parkinsonism Across Europe"],"prefix":"10.1002","volume":"13","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-6921-482X","authenticated-orcid":false,"given":"Bauke W.","family":"Dijkstra","sequence":"first","affiliation":[{"name":"Department of Neurology, Center of Expertise for Parkinson and Movement Disorders, Donders Institute for Brain, Cognition and Behavior Radboud University Medical Center  Nijmegen The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Catharina","family":"Muente","sequence":"additional","affiliation":[{"name":"Department of Neurology, Center of Expertise for Parkinson and Movement Disorders, Donders Institute for Brain, Cognition and Behavior Radboud University Medical Center  Nijmegen The Netherlands"},{"name":"Institute for General Practice and Palliative Care Hannover Medical School  Hannover Germany"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-4945-5498","authenticated-orcid":false,"given":"Michela","family":"Garon","sequence":"additional","affiliation":[{"name":"Padua Neuroscience Center (PNC) University of Padua  Padua Italy"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-3861-8012","authenticated-orcid":false,"given":"Kristina","family":"Rosqvist","sequence":"additional","affiliation":[{"name":"Division of Neurology, Department of Clinical Sciences Lund University  Lund Sweden"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Monica","family":"Scharfenort","sequence":"additional","affiliation":[{"name":"Division of Neurology, Department of Clinical Sciences Lund University  Lund Sweden"},{"name":"Department of Neurology, Rehabilitation Medicine, Memory and Geriatrics Skane University Hospital  Lund Sweden"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Katharina M.","family":"Lex","sequence":"additional","affiliation":[{"name":"Institute of Palliative Care Paracelsus Medical University  Salzburg Austria"},{"name":"Institute for Nursing Science and Interprofessional Learning University Medicine Greifswald  Greifswald Germany"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Philip","family":"Poku","sequence":"additional","affiliation":[{"name":"J Read UCL Queen Square Institute of Neurology University College London  London UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Eirini","family":"Nixina","sequence":"additional","affiliation":[{"name":"Unit of Medical Technology and Intelligent Information Systems, Department of Materials Science and Engineering University of Ioannina  Ioannina Greece"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Pille","family":"Taba","sequence":"additional","affiliation":[{"name":"Institute of Clinical Medicine University of Tartu  Tartu Estonia"},{"name":"Clinic of Neurology Tartu University Hospital  Tartu Estonia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"\u00dclle","family":"Krikmann","sequence":"additional","affiliation":[{"name":"Institute of Clinical Medicine University of Tartu  Tartu Estonia"},{"name":"Clinic of Neurology Tartu University Hospital  Tartu Estonia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Katrin","family":"Sikk","sequence":"additional","affiliation":[{"name":"Clinic of Neurology Tartu University Hospital  Tartu Estonia"},{"name":"North Estonian Regional Hospital  Tallinn Estonia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Katie","family":"Flanagan","sequence":"additional","affiliation":[{"name":"Division of Psychiatry, Marie Curie Palliative Care Research Department University College London  London UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-9872-6680","authenticated-orcid":false,"given":"Anette E.","family":"Schrag","sequence":"additional","affiliation":[{"name":"J Read UCL Queen Square Institute of Neurology University College London  London UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Spyros","family":"Konitsiotis","sequence":"additional","affiliation":[{"name":"Department of Neurology, Medical School University of Ioannina  Ioannina Greece"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Miltiadis","family":"Makrydimas","sequence":"additional","affiliation":[{"name":"Department of Neurology, Medical School University of Ioannina  Ioannina Greece"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Stefan","family":"Lorenzl","sequence":"additional","affiliation":[{"name":"Institute of Palliative Care Paracelsus Medical University  Salzburg Austria"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Per","family":"Odin","sequence":"additional","affiliation":[{"name":"Division of Neurology, Department of Clinical Sciences Lund University  Lund Sweden"},{"name":"Department of Neurology, Rehabilitation Medicine, Memory and Geriatrics Skane University Hospital  Lund Sweden"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"David J.","family":"Pedrosa","sequence":"additional","affiliation":[{"name":"Department of Neurology Philipps\u2010University Marburg  Marburg 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