{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2025,11,11]],"date-time":"2025-11-11T13:23:45Z","timestamp":1762867425251},"reference-count":27,"publisher":"Hogrefe Publishing Group","issue":"8","content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["Praxis"],"published-print":{"date-parts":[[2018,4]]},"abstract":"<jats:p> Klinischer Patientenbericht: ADPKD-Patienten erhalten Zugriff auf ihre Daten <\/jats:p><jats:p> Zusammenfassung. Studien zur Patientenbeteiligung in der medizinischen Versorgung deuten darauf hin, dass eine intensive Patientenbeteiligung die Gesundheit verbessert und die Vorsorgungszufriedenheit erh\u00f6ht. Insbesondere bei Behandlungsentscheidungen, die sowohl Schaden als auch Nutzen verursachen, sind gemeinsame Entscheidungen von Patienten und \u00c4rzten entscheidend um den Patienten auf den Behandlungsplan vorbereitet und ihn daf\u00fcr zu motivieren. Allerdings sind Instrumente, die den Patienten in den klinischen Versorgungsprozess und gemeinsamen Entscheidungsfindung einbeziehen, nicht weit verbreitet. Wir entwickelten ein klinisches Patientendokument f\u00fcr Patienten mit autosomal-dominanter polyzystischer Nierenerkrankung (ADPKD), f\u00fcr die k\u00fcrzlich eine neue Therapie \u2013 Tolvaptan, das die Progression verlangsamt, aber bemerkenswerte Nebenwirkungen hat \u2013 zur Verf\u00fcgung steht. Untersuchungen vor und nach der Entwicklung zeigten, dass ADPKD-Patienten eine Anzeige individueller Schweregradindikatoren mit Benchmarks f\u00fcr vergleichbare Patienten w\u00fcnschen. Die Kommunikation wird erleichtert und das Vertrauen der Patienten in die gemeinsam gef\u00e4llten Behandlungsentscheidungen verbessert. Ein solcher Patientenbericht ist leicht auf andere Krankheitsbilder \u00fcbertragbar und k\u00f6nnte als ein Aspekt eines Patienteninterventionsmodells in klinischen Zentren dienen. <\/jats:p>","DOI":"10.1024\/1661-8157\/a002946","type":"journal-article","created":{"date-parts":[[2018,4,12]],"date-time":"2018-04-12T07:34:01Z","timestamp":1523518441000},"page":"425-434","source":"Crossref","is-referenced-by-count":1,"title":["A Clinical Patient Reporting Tool: Giving ADPKD Patients Back Their                Data"],"prefix":"10.1024","volume":"107","author":[{"given":"Alison G.","family":"Abraham","sequence":"first","affiliation":[{"name":"Department of Epidemiology, Johns Hopkins                Bloomberg School of Public Health, Baltimore MD, USA"},{"name":"Department of Ophthalmology, Johns Hopkins                School of Medicine, Baltimore MD, USA"},{"name":"Epidemiology, Biostatistics and Prevention                Institute, University of Zurich"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Laura","family":"Girardat-Rotar","sequence":"additional","affiliation":[{"name":"Epidemiology, Biostatistics and Prevention                Institute, University of Zurich"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Sarah","family":"Ziegler","sequence":"additional","affiliation":[{"name":"Epidemiology, Biostatistics and Prevention                Institute, University of Zurich"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Markus","family":"Blum","sequence":"additional","affiliation":[{"name":"Medizinisches Kompetenzzentrum f\u00fcr                ADPKD, Suisse ADPKD, Department of Internal Medicine and Nephrology, Hirslanden,                Zurich"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Flavia","family":"Galletti","sequence":"additional","affiliation":[{"name":"Medizinisches Kompetenzzentrum f\u00fcr                ADPKD, Suisse ADPKD, Department of Internal Medicine and Nephrology, Hirslanden,                Zurich"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Milo A.","family":"Puhan","sequence":"additional","affiliation":[{"name":"Epidemiology, Biostatistics and Prevention                Institute, University of Zurich"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Andreas L.","family":"Serra","sequence":"additional","affiliation":[{"name":"Epidemiology, Biostatistics and Prevention                Institute, University of Zurich"},{"name":"Medizinisches Kompetenzzentrum f\u00fcr                ADPKD, Suisse ADPKD, Department of Internal Medicine and Nephrology, Hirslanden,                Zurich"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"101","reference":[{"key":"c1","doi-asserted-by":"publisher","DOI":"10.7326\/0003-4819-102-4-520"},{"key":"c2","doi-asserted-by":"publisher","DOI":"10.1097\/00005650-198903001-00010"},{"key":"c3","doi-asserted-by":"publisher","DOI":"10.1007\/BF02595921"},{"key":"c4","doi-asserted-by":"publisher","DOI":"10.1186\/1479-5868-9-25"},{"key":"c5","unstructured":"President\u2019s Commission for the                   Study of Ethical Problems in Medicine, Biomedical,                   Behavioral Research (US): Making Health Care                   Decisions: a report on the ethical and legal implications of informed consent in                   the patient-practitioner relationship. 1982.                   https:\/\/repository.library.georgetown.edu\/bitstream\/handle\/10822\/559354\/making_health_care_decisions.pdf?sequence=1&isAllowed=y;                   last access: 27.01.2018."},{"key":"c6","doi-asserted-by":"publisher","DOI":"10.1038\/oby.2011.65"},{"key":"c7","doi-asserted-by":"publisher","DOI":"10.1016\/j.pec.2011.05.011"},{"key":"c8","doi-asserted-by":"publisher","DOI":"10.1377\/hlthaff.var.63"},{"key":"c9","doi-asserted-by":"publisher","DOI":"10.1177\/0272989X09353947"},{"key":"c10","first-page":"CD001431","volume":"4","author":"Stacey D","year":"2017","journal-title":"Cochrane Database SystRev"},{"key":"c11","unstructured":"Center for Advancing Health:                   A new definition of patient engagement: What is engagement and why                   is it important? 2010. http:\/\/www.cfah.org\/pdfs\/CFAH_Engagement_Behavior_Framework_current.pdf; last                   access: 26.01.2018."},{"key":"c12","doi-asserted-by":"publisher","DOI":"10.1186\/1471-2369-8-13"},{"key":"c13","doi-asserted-by":"publisher","DOI":"10.1056\/NEJMoa0907419"},{"key":"c14","doi-asserted-by":"publisher","DOI":"10.1038\/ki.2010.375"},{"key":"c15","doi-asserted-by":"publisher","DOI":"10.1371\/journal.pone.0123555"},{"key":"c16","doi-asserted-by":"publisher","DOI":"10.1038\/ki.2008.558"},{"key":"c17","doi-asserted-by":"publisher","DOI":"10.1159\/000355375"},{"key":"c18","doi-asserted-by":"publisher","DOI":"10.7326\/0003-4819-150-9-200905050-00006"},{"key":"c19","doi-asserted-by":"publisher","DOI":"10.1681\/ASN.2013101138"},{"key":"c20","doi-asserted-by":"publisher","DOI":"10.1016\/S0140-6736(13)60595-4"},{"key":"c21","unstructured":"R Core Team. R:                   A language and environment for statistical                   computing. Vienna, Austria:                   R Foundation for Statistical Computing,                   2015. Available at: https:\/\/www.R-project.org\/; last access 26.01.2018."},{"key":"c22","doi-asserted-by":"publisher","DOI":"10.1111\/j.1475-6773.2005.00438.x"},{"key":"c23","doi-asserted-by":"publisher","DOI":"10.1111\/j.1475-6773.2004.00269.x"},{"key":"c24","unstructured":"MAXQDA,                   software for qualitative data analysis,                   1989\u20132017. Berlin, Germany:                   VERBI Software \u2013 Consult \u2013 Sozialforschung                   GmbH. http:\/\/www.maxqda.com\/faq\/how-do-i-cite-maxqda; letzter Zugriff:                   29.01.2018."},{"key":"c25","doi-asserted-by":"publisher","DOI":"10.1038\/nrneph.2014.132"},{"key":"c26","unstructured":"Institute for Patient- and                   Family-Centered Care. Frequently asked                   questions. 2011. http:\/\/www\u200b.ipfcc.org\/;                   accessed 26.01.2018."},{"key":"c27","unstructured":"IOM. Crossing                   the quality chasm: A new health system for the 21st century.                   Washington, DC; National Academy                   Press: 200"}],"container-title":["Praxis"],"original-title":[],"language":"de","link":[{"URL":"https:\/\/econtent.hogrefe.com\/doi\/pdf\/10.1024\/1661-8157\/a002946","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2021,3,17]],"date-time":"2021-03-17T03:16:45Z","timestamp":1615951005000},"score":1,"resource":{"primary":{"URL":"https:\/\/econtent.hogrefe.com\/doi\/10.1024\/1661-8157\/a002946"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2018,4]]},"references-count":27,"journal-issue":{"issue":"8","published-print":{"date-parts":[[2018,4]]}},"alternative-id":["10.1024\/1661-8157\/a002946"],"URL":"https:\/\/doi.org\/10.1024\/1661-8157\/a002946","relation":{},"ISSN":["1661-8157","1661-8165"],"issn-type":[{"value":"1661-8157","type":"print"},{"value":"1661-8165","type":"electronic"}],"subject":[],"published":{"date-parts":[[2018,4]]}}}