{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,1,15]],"date-time":"2026-01-15T14:38:06Z","timestamp":1768487886310,"version":"3.49.0"},"reference-count":28,"publisher":"Georg Thieme Verlag KG","issue":"04","license":[{"start":{"date-parts":[[2022,9,9]],"date-time":"2022-09-09T00:00:00Z","timestamp":1662681600000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["Gesundheitswesen"],"published-print":{"date-parts":[[2023,4]]},"abstract":"<jats:title>Zusammenfassung<\/jats:title><jats:p>\n          Ziel der Arbeit Menschen mit Paraplegie, Angeh\u00f6rige und\n                    professionell Versorgende k\u00f6nnen mit ihrer Erfahrung und praktischen\n                    Kenntnissen zur Entwicklung patientenorientierter, versorgungsrelevanter\n                    Forschungsfragen beitragen. Um sie in die Entwicklung einer Forschungsagenda\n                    einzubeziehen, hat die James Lind Alliance (JLA) einen etablierten Ansatz\n                    entwickelt. Das Ziel dieser Studie ist die Entwicklung einer Forschungsagenda zu\n                    Paraplegie infolge einer traumatischen Querschnittl\u00e4hmung, in Anlehnung\n                    an diesen Ansatz.<\/jats:p><jats:p>\n          Methodik Es wurden vier aufeinander aufbauende Online-Befragungen unter\n                    Menschen mit einer traumatisch bedingten Paraplegie, ihren Angeh\u00f6rigen\n                    und professionell Versorgenden durchgef\u00fchrt. In der ersten haben die\n                    Teilnehmenden aus ihrer Sicht unbeantwortete Fragen frei formuliert. Diese\n                    wurden zusammengefasst und dahingehend gepr\u00fcft, ob sie bereits durch\n                    Forschung beantwortbar sind. Die unbeantworteten Fragen wurden in weiteren\n                    Befragungen schrittweise priorisiert: In der zweiten wurden sie auf einer\n                    f\u00fcnfstufigen Rating-Skala (1\u20135) hinsichtlich ihrer Relevanz\n                    bewertet, um eine Shortlist aus den Fragen zu entwickeln, die mit einem\n                    Mittelwert von \u00fcber 4 bewertet wurden. In der dritten Umfrage wurden\n                    daraus die Top 10 bestimmt, deren Rangordnung in der vierten Befragung ermittelt\n                    wurde.<\/jats:p><jats:p>\n          Ergebnisse Es wurden 38 unbeantwortete Forschungsfragen identifiziert (1.\n                    Befragung; n=52). Davon wurden 26 Fragen als wichtig bewertet (2.\n                    Befragung; n=53), aus denen 10 Fragen ausgew\u00e4hlt (3. Befragung;\n                    n=17) und in eine Rangordnung gebracht wurden (4. Befragung;\n                    n=12). Vier Priorit\u00e4ten betreffen\n                    Behandlungsm\u00f6glichkeiten der Querschnittl\u00e4hmung oder damit\n                    verbundener Gesundheitsprobleme, drei die Gestaltung der Gesundheitsversorgung\n                    im Bereich der Hilfsmittel und der Implementierung von Forschung, zwei\n                    adressieren Patientenfaktoren, die zur Verbesserung der eigenen Situation\n                    beitragen und eine die Erforschung des Krankheitsverlaufs.<\/jats:p><jats:p>\n          Schlussfolgerung Es wurden neun Fragestellungen priorisiert, die auf\n                    Forschung zur Verbesserung der Lebens- und Versorgungssituation mit einer\n                    Querschnittl\u00e4hmung abzielen, w\u00e4hrend eine Frage die Heilung\n                    adressiert. Die priorisierten Fragen sollten durch Forschung aufgegriffen\n                    werden, damit Problemstellungen adressiert werden, die f\u00fcr Betroffene,\n                    Angeh\u00f6rige und professionell Versorgende relevant sind.<\/jats:p>","DOI":"10.1055\/a-1829-6781","type":"journal-article","created":{"date-parts":[[2022,9,10]],"date-time":"2022-09-10T00:19:29Z","timestamp":1662769169000},"page":"250-257","source":"Crossref","is-referenced-by-count":1,"title":["Identifizierung und Priorisierung von Forschungsfragen zu Paraplegie\n                    infolge einer unfallbedingten Querschnittl\u00e4hmung mit Betroffenen,\n                    Angeh\u00f6rigen und professionell Versorgenden"],"prefix":"10.1055","volume":"85","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-2024-8295","authenticated-orcid":false,"given":"Michael","family":"Levelink","sequence":"additional","affiliation":[{"name":"Department f\u00fcr Versorgungsforschung, Carl von Ossietzky\n                    Universitat Oldenburg, Oldenburg, Germany"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-6174-4909","authenticated-orcid":false,"given":"Mona","family":"Voigt-Barbarowicz","sequence":"additional","affiliation":[{"name":"Department f\u00fcr Versorgungsforschung, Carl von Ossietzky\n                    Universitat Oldenburg, Oldenburg, Germany"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Carlotta","family":"Ahlers","sequence":"additional","affiliation":[{"name":"Forschungspartnerin"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-4197-6048","authenticated-orcid":false,"given":"Anna Levke","family":"Br\u00fctt","sequence":"additional","affiliation":[{"name":"Department f\u00fcr Versorgungsforschung, Carl von Ossietzky\n                    Universitat Oldenburg, Oldenburg, Germany"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"194","published-online":{"date-parts":[[2022,9,9]]},"reference":[{"key":"ref1","first-page":"303","article-title":"Spinal Cord Injury in Germany \u2013 Data on Health, Medical Care and Life\n                    Situation","volume":"26","author":"M Blumenthal","year":"2016","journal-title":"Physikalische Medizin Rehabilitationsmedizin\n                    Kurortmedizin"},{"key":"ref2","doi-asserted-by":"crossref","first-page":"S23","DOI":"10.1097\/PHM.0000000000000647","article-title":"Study Protocol of the International Spinal Cord Injury (InSCI) Community\n                    Survey","volume":"96","author":"MH Gross-Hemmi","year":"2017","journal-title":"Am J Phys Med Rehabil"},{"key":"ref3","doi-asserted-by":"crossref","first-page":"2103","DOI":"10.1016\/j.apmr.2020.01.022","article-title":"Cohort Profile of the International Spinal Cord Injury Community Survey\n                    Implemented in 22 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