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DOI: 10.1055/s-2007-963524
© Georg Thieme Verlag KG Stuttgart · New York
Course of Crohn’s Disease Prior to Establishment of the Diagnosis
Analyse des Krankheitsverlaufes bis zur Diagnosestellung bei Morbus CrohnPublication History
manuscript received: 14.6.2007
manuscript accepted: 13.8.2007
Publication Date:
06 February 2008 (online)
Zusammenfassung
Hintergrund und Fragestellung: Der Krankheitsverlauf des Morbus Crohn vom Auftreten der ersten Beschwerden bis zur Diagnosestellung ist weitgehend unbekannt. Wir führten daher eine Befragung bei neu erkrankten Patienten durch. Material und Methoden: Bei Patienten mit der Erstdiagnose eines M. Crohn innerhalb der vorangegangenen 12 Monate wurde eine Befragung über ein Internetportal durchgeführt. In dieser retrospektiven Längsschnitterhebung wurden Daten zu Demografie, Sozialstatus, Diagnosezeitraum, Beschwerdebild, Arztkontakten, Diagnostik, Therapie und Lokalisation (Darmabschnitt) erfasst. Die Befragung erfolgte über ein Internetportal pseudonymisiert mittels Transaktionsnummer, der Patientenkontakt wurde von der Deutschen Morbus Crohn/Colitis ulcerosa Vereinigung (DCCV) e. V. und dem Bundesverband Niedergelassener Gastroenterologen Deutschlands (bng) e. V. vermittelt. Ergebnisse: 13 Monate (Median) verstrichen bei den Befragten zwischen ersten Symptomen und der Diagnosestellung. In diesem Zeitraum wurde fünfmal ein Arzt konsultiert, 44 % der Befragten hatten im Median 1,5 Krankenhausaufenthalte und 65 % waren aufgrund der Beschwerden im Median 14 Tage arbeitsunfähig. Im Mittel wurden 8,6 ± 7,1 Standarduntersuchungen pro Patient bis zur Diagnosestellung durchgeführt. Das allgemeine Befinden wurde in 84 % als zeitweise schlecht bis sehr schlecht bezeichnet. Das angegebene Verteilungsmuster der Erkrankung, das Alter bei Erstmanifestation und Diagnosestellung sowie die Beschwerdesymptomatik sind mit internationalen Daten vergleichbar. Diskussion: Die Diagnose eines M. Crohn wird auch heute mit einer Latenz von über einem Jahr gestellt. Eine verzögerte Diagnosestellung ist mit einem Leidensdruck des Patienten und mit einer Einschränkung der Erwerbsfähigkeit verbunden.
Abstract
Background: The course of Crohn’s disease prior to the establishment of the diagnosis is widely unknown. Therefore, we instigated a survey amongst newly diagnosed patients. Patients and Methods: Patients diagnosed with CD less than 12 months before enrollment were included. Data on demography, social status, time interval to diagnosis, symptoms, and health care service use were collected in a retrospective, web-based, census. Patients were contacted in cooperation with two organizations: a German patients’ organization (Deutsche Morbus Crohn/Colitis ulcerosa Vereinigung e. V. [DCCV]) and a professional organization of German gastroenterologists (Berufsverband der Niedergelassenen Gastroenterologen Deutschlands e. V. [bng]). Study participation was anonymous by use of a transaction number. Results: The median interval period between onset of first symptoms and diagnosis was 13 months. During this time, participants reported having five doctor consultations on average, with 44 % of them having a mean of 1.5 hospitalizations. 65 % were unfit for work with a 14 day median (2 to 480 days) due to their symptoms. A mean ( ± SD) of 8.6 ( ± 7.1) diagnostic tests were performed before the diagnosis was established. Overall health state was judged as temporarily bad or very bad by 84 % of the participants. Age at diagnosis, characteristic symptoms, and localization of the disease for the participants did not differ from previously reported international data. Discussion: This web-based survey shows a substantial time interval of over one year until diagnosis of Crohn’s disease amongst the study participants. This period is characterized by both psychological stress and impaired ability to work.
Schlüsselwörter
Morbus Crohn - Diagnosestellung - Erstdiagnose - Diagnoselatenz - online
Key words
Crohn’s disease - establishment of diagnosis - first diagnosis - latency of diagnosis - online
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Dr. Jörg G. Albert
Universitäts- und Poliklinik für Innere Medizin I, Martin-Luther-Universität Halle-Wittenberg
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