{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,8,17]],"date-time":"2026-08-17T22:14:28Z","timestamp":1787004868379,"version":"build-2736575974"},"reference-count":12,"publisher":"Georg Thieme Verlag KG","issue":"10","license":[{"start":{"date-parts":[[2025,1,17]],"date-time":"2025-01-17T00:00:00Z","timestamp":1737072000000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by-nc-nd\/4.0\/"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["Gesundheitswesen"],"published-print":{"date-parts":[[2025,10]]},"abstract":"<jats:title>Zusammenfassung<\/jats:title>\n                  <jats:p>Menschen mit Down-Syndrom haben im Vergleich zur\n                        normativen Bev\u00f6lkerung genetisch bedingt ein deutlich erh\u00f6htes Risiko, an\n                        einer Alzheimer-Demenz mit fr\u00fchem Beginn zu erkranken. Dadurch ergeben sich\n                        besondere Herausforderungen sowie die Notwendigkeit einer\n                        zielgruppenspezifischen Patient Journey.<\/jats:p>\n                  <jats:p>In einer Interviewstudie mit medizinischen\n                        Leitungserbringenden, Vertreter:innen von Selbsthilfeorganisationen und\n                        Wohn- und Arbeitseinrichtungen als Baustein des Innovationsfondsprojektes\n                        \u201eDS-Demenz\u201c wurden H\u00fcrden im medizinischen Versorgungsprozess der Zielgruppe\n                        und Ans\u00e4tze zu ihrer \u00dcberwindung erhoben. Die vorgestellten Ergebnisse\n                        fokussieren auf Zugang zur und Schnittstellengestaltung in der medizinischen\n                        Versorgung. 14 leitfadengest\u00fctzte Interviews wurden von einem\n                        Moderator:innenteam per Videokonferenz durchgef\u00fchrt, aufgezeichnet und\n                        transkribiert. Die Auswertung erfolgte \u00fcber eine qualitative Inhaltsanalyse\n                        in Anlehnung an Mayring.<\/jats:p>\n                  <jats:p>Im Zugang zur Diagnostik wurde von Verz\u00f6gerungen durch\n                        Schwierigkeiten bei der Symptomerkennung der Alzheimer Demenz aufgrund der\n                        Variabilit\u00e4t des kognitiven Ausgangsniveaus und der in dem Zusammenhang\n                        fehlenden Sachkunde der Untersucher:innen berichtet. Entsprechend zeigten\n                        sich bei Erstzugang und Weiterleitung im Rahmen der Patient Journey H\u00fcrden\n                        aufgrund h\u00e4ufig begrenzter medizinischer Kenntnisse \u00fcber Erkrankungsrisiko\n                        und -auspr\u00e4gung in der Regelversorgung sowie eines unzureichenden Angebots\n                        und fehlender Bekanntheit spezialisierter Leistungserbringender. Auch in der\n                        Heilmitteltherapie wurde ein unzureichendes Angebot spezialisierter\n                        Leistungserbringender deutlich. Ein Schwerpunkt der Verbesserungsvorschl\u00e4ge\n                        lag auf einer gezielteren Patient:innensteuerung durch das Versorgungssystem\n                        und einfach zug\u00e4nglicher Information f\u00fcr Patient:innen und ihre Betreuenden\n                        sowie auf einer verbesserten Schulung der \u00c4rzt:innen.<\/jats:p>\n                  <jats:p>Die identifizierten H\u00fcrden entsprechen sowohl den in\n                        der internationalen Literatur genannten H\u00fcrden wie dem unzureichenden\n                        Angebot an spezialisierten Leistungserbringenden und Informationsdefiziten\n                        \u00fcber die spezifischen Krankheitsrisiken und Symptomatiken der Population als\n                        auch den bekannten Steuerungs- und Koordinationsdefiziten des fragmentierten\n                        deutschen Gesundheitssystems. L\u00f6sungsans\u00e4tze sind einerseits in verbesserten\n                        Informations- und Schulungsangeboten f\u00fcr Betreuende und\n                        Leistungserbringende, andererseits aber in der Verbreiterung des Angebots\n                        spezialisierter Leistungserbringender, hier insbesondere der Medizinischen\n                        Zentren f\u00fcr Erwachsene mit Behinderung (MEZB), zu sehen. Diese\n                        L\u00f6sungsans\u00e4tze gehen im weiteren Verlauf des Forschungsprojekts in die\n                        Entwicklung gesundheitspolitischer Handlungsempfehlungen ein, um die\n                        Versorgungssituation Betroffener nachhaltig zu optimieren.<\/jats:p>","DOI":"10.1055\/a-2486-6360","type":"journal-article","created":{"date-parts":[[2025,1,17]],"date-time":"2025-01-17T19:06:07Z","timestamp":1737140767000},"page":"604-612","source":"Crossref","is-referenced-by-count":5,"title":["Patient Journey von Menschen mit Down-Syndrom und Demenz: Zugang zur\n                    und Schnittstellen in der medizinischen Versorgung \u2013 eine qualitative\n                    Analyse"],"prefix":"10.1055","volume":"87","author":[{"given":"Anke","family":"Walendzik","sequence":"additional","affiliation":[{"name":"Gesundheitspolitik, EsFoMed \u2013 Essener Forschungsinstitut f\u00fcr\n                    Medizinmanagement GmbH, Essen, Germany"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Milena","family":"Weitzel","sequence":"additional","affiliation":[{"name":"Lehrstuhl f\u00fcr Medizinmanagement, Universit\u00e4t Duisburg-Essen, Essen,\n                    Germany"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Godwin D.","family":"Giebel","sequence":"additional","affiliation":[{"name":"Lehrstuhl f\u00fcr Medizinmanagement, Universit\u00e4t Duisburg-Essen, Essen,\n                    Germany"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Pascal","family":"Raszke","sequence":"additional","affiliation":[{"name":"Lehrstuhl f\u00fcr Medizinmanagement, Universit\u00e4t Duisburg-Essen, Essen,\n                    Germany"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"J\u00fcrgen","family":"Wasem","sequence":"additional","affiliation":[{"name":"Lehrstuhl f\u00fcr Medizinmanagement, Universit\u00e4t Duisburg-Essen, Essen,\n                    Germany"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Johannes","family":"Levin","sequence":"additional","affiliation":[{"name":"Neurologische Klinik und Poliklinik, Ludwig-Maximilians-Universit\u00e4t\n                    M\u00fcnchen, M\u00fcnchen, Germany"},{"name":"DZNE, Deutsches Zentrum f\u00fcr Neurodegenerative Erkrankungen Standort\n                    M\u00fcnchen, M\u00fcnchen, Germany"},{"name":"SyNergy, Munich Cluster for Systems Neurology, M\u00fcnchen,\n                    Germany"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Olivia","family":"Wagemann","sequence":"additional","affiliation":[{"name":"Neurologische Klinik und Poliklinik, Ludwig-Maximilians-Universit\u00e4t\n                    M\u00fcnchen, M\u00fcnchen, Germany"},{"name":"DZNE, Deutsches Zentrum f\u00fcr Neurodegenerative Erkrankungen Standort\n                    M\u00fcnchen, M\u00fcnchen, Germany"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Elisabeth","family":"Wlasich","sequence":"additional","affiliation":[{"name":"Neurologische Klinik und Poliklinik, Ludwig-Maximilians-Universit\u00e4t\n                    M\u00fcnchen, M\u00fcnchen, Germany"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Georg","family":"N\u00fcbling","sequence":"additional","affiliation":[{"name":"Neurologische Klinik und Poliklinik, Ludwig-Maximilians-Universit\u00e4t\n                    M\u00fcnchen, M\u00fcnchen, Germany"},{"name":"DZNE, Deutsches Zentrum f\u00fcr Neurodegenerative Erkrankungen Standort\n                    M\u00fcnchen, M\u00fcnchen, Germany"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Johannes","family":"Pantel","sequence":"additional","affiliation":[{"name":"Institut f\u00fcr Allgemeinmedizin, Goethe-Universit\u00e4t Frankfurt am Main,\n                    Frankfurt am Main, Germany"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Valentina A.","family":"Tesky","sequence":"additional","affiliation":[{"name":"Institut f\u00fcr Allgemeinmedizin, Goethe-Universit\u00e4t Frankfurt am Main,\n                    Frankfurt am Main, Germany"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Arthur","family":"Schall","sequence":"additional","affiliation":[{"name":"Institut f\u00fcr Allgemeinmedizin, Goethe-Universit\u00e4t Frankfurt am Main,\n                    Frankfurt am Main, Germany"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Theresa","family":"H\u00fcer","sequence":"additional","affiliation":[{"name":"Lehrstuhl f\u00fcr Medizinmanagement, Universit\u00e4t Duisburg-Essen, Essen,\n                    Germany"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"194","published-online":{"date-parts":[[2025,1,17]]},"reference":[{"issue":"11","key":"ref1","doi-asserted-by":"publisher","first-page":"930","DOI":"10.1016\/S1474-4422(21)00245-3","article-title":"Down syndrome-associated Alzheimer\u2019s disease: a genetic form of dementia","volume":"20","author":"J Fortea","year":"2021","journal-title":"Lancet Neurol"},{"key":"ref2","doi-asserted-by":"publisher","DOI":"10.1002\/alz.13779","article-title":"Age of Alzheimer\u2019s disease diagnosis in people with Down syndrome and associated\n                    factors: Results from the Horizon 21 European Down syndrome consortium","author":"F K Larsen","year":"2024","journal-title":"Alzheimers Dement"},{"key":"ref4","doi-asserted-by":"publisher","first-page":"1071","DOI":"10.3233\/SHTI200326","article-title":"Towards a Lean Process for Patient Journey Mapping \u2013 A Case Study in a Large\n                    Academic 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