{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2025,2,21]],"date-time":"2025-02-21T08:33:42Z","timestamp":1740126822557,"version":"3.37.3"},"reference-count":30,"publisher":"Georg Thieme Verlag KG","issue":"03","content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["Z Gastroenterol"],"published-print":{"date-parts":[[2021,3]]},"abstract":"<jats:title>Zusammenfassung<\/jats:title><jats:p>Hintergrund\u2002Im Jahr 1976 gr\u00fcndete sich die Selbsthilfeorganisation \u201eArbeitskreis der Pankreatektomierten e.\u200aV.\u201c (AdP). Sie ist mit \u00fcber 1000 Mitgliedern die mit Abstand gr\u00f6\u00dfte Gruppe von Betroffenen mit Pankreaserkrankungen in Deutschland. AdP-Mitgliedern kommt aufgrund ihrer Betroffenenkompetenz eine bedeutende Unterst\u00fctzungsfunktion f\u00fcr Ratsuchende zu. Die vorliegende, von Patienten veranlasste Querschnitts- und Versorgungsforschungsstudie hat das Ziel, Ergebnisse nach Pankreasoperationen aus Patientensicht zu erheben.<\/jats:p><jats:p>Methode\u2002Allen Mitgliedern des AdP wird seit dem 03.03.2018 ein Fragebogen zu 11 Themenkomplexen zugestellt. Die Daten werden in eine pseudonymisierte Datenbank aufgenommen.<\/jats:p><jats:p>Ergebnisse\u2002625 pankreasoperierte Patienten nahmen an der Studie teil (R\u00fccklaufquote 55,4\u200a%). 57,5\u200a% erhielten Pankreaskopfresektionen, 15,5\u200a% Pankreaslinksresektionen, 23,2\u200a% Pankreatektomien und 4,0\u200a% einen sonstigen oder nicht spezifizierten Eingriff. Bei 37,9\u200a% wurde ein Pankreaskarzinom diagnostiziert, bei 38,2\u200a% ein sonstiger Pankreastumor, bei 25\u200a% eine Pankreatitis, bei 4\u200a% eine Autoimmunpankreatitis und bei 2,7\u200a% andere seltene Erkrankungen. Ein Teil der Patienten hatte mehr als eine Pankreaserkrankung.<\/jats:p><jats:p>Unter den 237 operierten Pankreaskarzinompatienten lebten 82 Patienten l\u00e4nger als 5 Jahre und davon 41 Patienten l\u00e4nger als 10 Jahre. 24,5\u200a% der Karzinompatienten hatten Zweitkarzinome und 13,9\u200a% nahe Verwandte mit einem Pankreaskarzinom.<\/jats:p><jats:p>Nach Pankreasoperationen war der Gewichtsverlust eingriffsabh\u00e4ngig betr\u00e4chtlich, am gr\u00f6\u00dften perioperativ nach Pankreatektomie (17,8\u200a\u00b1\u200a9,5\u200akg). Die Diabetespr\u00e4valenz betrug 54,1\u200a%, die Inzidenz perioperativer Diabetesneuerkrankungen 33,3\u200a%. 91,5\u200a% ben\u00f6tigten postoperativ eine Lipasesubstitution im Mittel von 189\u200a417\u200aIE\/Tag. Die Lebensqualit\u00e4t (k\u00f6rperlich\/seelisch\/sozial) zeigte sich von der Operationsart unabh\u00e4ngig.<\/jats:p><jats:p>Schlussfolgerung\u2002Patienten nach komplexen Pankreasresektionen sind zeitlebens mit Einschr\u00e4nkungen im t\u00e4glichen Leben konfrontiert. Selbsthilfeorganisationen wie der AdP k\u00f6nnen einen wichtigen, jedoch bislang wenig genutzten Beitrag zur Erforschung dieser Erkrankungen leisten, und zwar einerseits durch den Perspektivwechsel, andererseits durch Generierung gro\u00dfer Patientenkollektive, z.\u200aB. die sehr gro\u00dfe Gruppe der Langzeit\u00fcberlebenden.<\/jats:p>","DOI":"10.1055\/a-1348-2680","type":"journal-article","created":{"date-parts":[[2021,1,28]],"date-time":"2021-01-28T01:38:41Z","timestamp":1611797921000},"page":"214-224","source":"Crossref","is-referenced-by-count":0,"title":["Ergebnisse nach Pankreaseingriffen aus Sicht der Betroffenen: Versorgungsforschung der Selbsthilfegruppe \u201eArbeitskreis der\u00a0Pankreatektomierten e.\u200aV.\u201c"],"prefix":"10.1055","volume":"59","author":[{"given":"Ioannis","family":"Dimopoulos","sequence":"additional","affiliation":[{"name":"Pankreaszentrum Minden, Johannes Wesling Klinikum Minden, Universit\u00e4tsklinikum der Ruhr-Universit\u00e4t Bochum, Minden"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Gabriele","family":"Meyer","sequence":"additional","affiliation":[{"name":"Pankreaszentrum Minden, Johannes Wesling Klinikum Minden, Universit\u00e4tsklinikum der Ruhr-Universit\u00e4t Bochum, Minden"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Saleem Ibrahim","family":"Elhabash","sequence":"additional","affiliation":[{"name":"Pankreaszentrum Minden, Johannes Wesling Klinikum Minden, Universit\u00e4tsklinikum der Ruhr-Universit\u00e4t Bochum, Minden"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Michele","family":"Sorleto","sequence":"additional","affiliation":[{"name":"Pankreaszentrum Minden, Johannes Wesling Klinikum Minden, Universit\u00e4tsklinikum der Ruhr-Universit\u00e4t Bochum, Minden"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Carsten","family":"Gartung","sequence":"additional","affiliation":[{"name":"Pankreaszentrum Minden, Johannes Wesling Klinikum Minden, Universit\u00e4tsklinikum der Ruhr-Universit\u00e4t Bochum, Minden"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Nils","family":"Ewald","sequence":"additional","affiliation":[{"name":"Pankreaszentrum Minden, Johannes Wesling Klinikum Minden, Universit\u00e4tsklinikum der Ruhr-Universit\u00e4t Bochum, Minden"},{"name":"Arbeitskreis der Pankreatektomierten AdP e.\u200aV., Bundesgesch\u00e4ftsstelle, Bonn"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Ulrich Klaus","family":"Fetzner","sequence":"additional","affiliation":[{"name":"Pankreaszentrum Minden, Johannes Wesling Klinikum Minden, Universit\u00e4tsklinikum der Ruhr-Universit\u00e4t Bochum, Minden"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Lutz","family":"Otto","sequence":"additional","affiliation":[{"name":"Arbeitskreis der Pankreatektomierten AdP e.\u200aV., Bundesgesch\u00e4ftsstelle, Bonn"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Friedhelm","family":"M\u00f6hlenbrock","sequence":"additional","affiliation":[{"name":"Arbeitskreis der Pankreatektomierten AdP e.\u200aV., Bundesgesch\u00e4ftsstelle, Bonn"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Waldemar","family":"Uhl","sequence":"additional","affiliation":[{"name":"Klinik f\u00fcr Allgemein- und Viszeralchirurgie, St. Josef-Hospital Bochum, Klinikum der Ruhr-Universit\u00e4t Bochum, Bochum"},{"name":"Arbeitskreis der Pankreatektomierten AdP e.\u200aV., Bundesgesch\u00e4ftsstelle, Bonn"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-8661-6986","authenticated-orcid":false,"given":"Berthold","family":"Gerdes","sequence":"additional","affiliation":[{"name":"Pankreaszentrum Minden, Johannes Wesling Klinikum Minden, Universit\u00e4tsklinikum der Ruhr-Universit\u00e4t Bochum, Minden"},{"name":"Arbeitskreis der Pankreatektomierten AdP e.\u200aV., Bundesgesch\u00e4ftsstelle, Bonn"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"194","published-online":{"date-parts":[[2021,1,27]]},"reference":[{"issue":"07","key":"ref1","doi-asserted-by":"crossref","first-page":"1193","DOI":"10.1007\/s11605-008-0505-z","article-title":"Cachexia worsens prognosis in patients with resectable pancreatic cancer","volume":"12","author":"J Bachmann","year":"2008","journal-title":"Journal of gastrointestinal surgery: official journal of the Society for Surgery of the Alimentary Tract"},{"key":"ref2","doi-asserted-by":"crossref","first-page":"16","DOI":"10.1007\/s11892-015-0589-2","article-title":"Diabetes after pancreatic surgery: Novel issues","volume":"15","author":"M Scavini","year":"2015","journal-title":"Current diabetes reports"},{"key":"ref3","first-page":"947","article-title":"Exocrine and endocrine pancreatic insufficiency after pancreatic surgery. 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