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The incidence and prevalence of pediatric-onset inflammatory bowel disease (PIBD) are on the rise worldwide. Initial symptoms are often recognized with a delay, which reduces the quality of life and may lead to an increased rate of complications. The aim of this study was to determine the diagnostic delay in PIBD and to identify potential influencing factors. Therefore, data from the German-Austrian patient registry CEDATA-GPGE for children and adolescents with PIBD were analyzed for the period January 2014 to December 2018. There were 456 children identified in the data, thereof 258 children (57%) with Crohn’s disease (CD) and 198 children (43%) with Ulcerative colitis (UC). The median age was 13.3 years (interquartile range (IQR) = 10.9−15.0), and 44% were females. The median diagnostic delay was 4.1 months (IQR = 2.1–7.0) in CD and 2.4 months (IQR = 1.2–5.1) in UC (p = 0.01). UC was associated with earlier diagnosis than CD (p < 0.001). Only a few factors influencing the diagnostic delay have been verified, e.g., abdominal pain at night and if video capsule endoscopy was performed. Diagnostic delay improved over the years in participating centers, but the level of awareness needs to be high even in common symptoms like abdominal pain.
Background Patients of geriatrics are often treated by several health care providers at the same time. The spatial, informational, and organizational separation of these health care providers can hinder the effective treatment of these patients. Objective This study aimed to develop a regional health information exchange (HIE) system to improve HIE in geriatric treatment. This study also evaluated the usability of the regional HIE system and sought to identify barriers to and facilitators of its implementation. Methods The development of the regional HIE system followed the community-based participatory research approach. The primary outcomes were the usability of the regional HIE system, expected implementation barriers and facilitators, and the quality of the developmental process. Data were collected and analyzed using a mixed methods approach. Results A total of 3 focus regions were identified, 22 geriatric health care providers participated in the development of the regional HIE system, and 11 workshops were conducted between October 2019 and September 2020. In total, 12 participants responded to a questionnaire. The main results were that the regional HIE system should support the exchange of assessments, diagnoses, medication, assistive device supply, and social information. The regional HIE system was expected to be able to improve the quality and continuity of care. In total, 5 adoption facilitators were identified. The main points were adaptability of the regional HIE system to local needs, availability to different patient groups and treatment documents, web-based design, trust among the users, and computer literacy. A total of 13 barriers to adoption were identified. The main expected barriers to implementation were lack of resources, interoperability issues, computer illiteracy, lack of trust, privacy concerns, and ease-of-use issues. Conclusions Participating health care professionals shared similar motivations for developing the regional HIE system, including improved quality of care, reduction of unnecessary examinations, and more effective health care provision. An overly complicated registration process for health care professionals and the patients’ free choice of their health care providers hinder the effectiveness of the regional HIE system, resulting in incomplete patient health information. However, the web-based design of the system bridges interoperability problems that exist owing to the different technical and organizational structures of the health care facilities involved. The regional HIE system is better accepted by health care professionals who are already engaged in an interdisciplinary, geriatric-focused network. This might indicate that pre-existing cross-organizational structures and processes are prerequisites for using HIE systems. The participatory design supports the development of technologies that are adaptable to regional needs. Health care providers are interested in participating in the development of an HIE system, but they often lack the required time, knowledge, and resources.
Zusammenfassung Hintergrund Die ambulant-pädiatrische Versorgung wird in ländlichen Regionen häufig von Hausärzten übernommen. Dies ist in vielen Fällen adäquat, entspricht aber nicht dem Ziel der ambulanten Bedarfsplanung, die Versorgung für alle gesetzlich Versicherten unabhängig von Wohnort oder Einkommen patientennah und gleichermaßen zugänglich zu gestalten. Eine Idee, fachärztliche Expertise regelmäßig in die Versorgung einzubeziehen, ist die Durchführung von pädiatrischen Sprechstunden in Hausarzt-Praxen (Tandem-Praxen). Neben der Evaluation von Machbarkeit und Akzeptanz dieser neuen interdisziplinären Kooperationsform wurde untersucht, ob damit der räumliche Zugang zu pädiatrischer Versorgung verbessert wird. Methoden Zunächst wurden teilnahmebereite Hausärzte in Orten gesucht, in denen der nächste Pädiater mehr als 20 Kilometer entfernt ist. Im Anschluss wurden Pädiater gewonnen, die regelmäßig in den Hausarzt-Praxen Sprechstunden anbieten wollten. Zur Evaluation der Feldphase (Dauer: 12 Monate) wurden folgende Daten erhoben: Eltern-Fragebögen zum Zeitpunkt des Studieneinschlusses, Ärzte-Fragebögen zu jeder Konsultation sowie Daten aus den Praxisinformationssystemen der teilnehmenden Praxen. Es wurde ein prozessbegleitendes Tagebuch geführt. Für die Beantwortung der Frage nach einer Verbesserung des räumlichen Zugangs zu pädiatrischer Versorgung wurden mit Hilfe eines Geo-Informations-Systems Entfernungen zwischen Wohnort und der pädiatrischen Versorgungsmöglichkeit vor und nach Projektstart berechnet. Ergebnisse Im April 2019 wurden zwei Tandem-Sprechstunden implementiert, die im Beobachtungszeitraum (12 Monate) von 192 Kindern und Jugendlichen (50,2% weiblich) insgesamt 387mal aufgesucht wurden. Die Pädiater gaben insgesamt 482 Vorstellungsgründe an, dies waren in 36,9% Impfungen (n=178) und in 14,9% Krankheits-Früherkennungs-Untersuchungen (n=72). Häufigste ICD-10-Gruppen: Krankheiten des Atmungssystems (J00-J99: 8,5%, n=41) und Psychische und Verhaltensstörungen (F00-F99: 7,7%, n=37). Die durchschnittliche Entfernung von der Wohnung zur nächstgelegenen pädiatrischen Praxis betrug 20,2 Kilometer (Min 0,3; Max 34,8), zur Tandem-Praxis waren es 5,1 Kilometer (Min 0,1; Max 26,7). Schlussfolgerung Alle beteiligten Ärzt*innen wollten nach Projektende die Tandem-Sprechstunden weiterführen. Tandem-Praxen können in verschiedener Ausprägung helfen, dauerhafte oder vorübergehende Versorgungsengpässe insbesondere in ländlichen Regionen auszugleichen.
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