Por favor, use este identificador para citar o enlazar este ítem:
https://observatorio.fm.usp.br/handle/OPI/30208
Título: | International management platform for children's interstitial lung disease (chILD-EU) |
Autor: | GRIESE, Matthias; SEIDL, Elias; HENGST, Meike; REU, Simone; ROCK, Hans; ANTHONY, Gisela; KIPER, Nural; EMIRALIOGLU, Nagehan; SNIJDERS, Deborah; GOLDBECK, Lutz; LEIDL, Reiner; LEY-ZAPOROZHAN, Julia; KRUEGER-STOLLFUSS, Ingrid; KAMMER, Birgit; WESSELAK, Traudl; EISMANN, Claudia; SCHAMS, Andrea; NEUNER, Doerthe; MACLEAN, Morag; NICHOLSON, Andrew G.; LAUREN, McCann; CLEMENT, Annick; EPAUD, Ralph; BLIC, Jacques de; ASHWORTH, Michael; AURORA, Paul; CALDER, Alistair; WETZKE, Martin; KAPPLER, Matthias; CUNNINGHAM, Steve; SCHWERK, Nicolaus; BUSH, Andy |
Citación: | THORAX, v.73, n.3, p.231-239, 2018 |
Resumen: | Background Children's interstitial lung diseases (chILD) cover many rare entities, frequently not diagnosed or studied in detail. There is a great need for specialised advice and for internationally agreed subclassification of entities collected in a register. Our objective was to implement an international management platform with independent multidisciplinary review of cases at presentation for long-term follow-up and to test if this would allow for more accurate diagnosis. Also, quality and reproducibility of a diagnostic subclassification system were assessed using a collection of 25 complex chILD cases. Methods A web-based chILD management platform with a registry and biobank was successfully designed and implemented. Results Over a 3-year period, 575 patients were included for observation spanning a wide spectrum of chILD. In 346 patients, multidisciplinary reviews were completed by teams at five international sites (Munich 51%, London 12%, Hannover 31%, Ankara 1% and Paris 5%). In 13%, the diagnosis reached by the referring team was not confirmed by peer review. Among these, the diagnosis initially given was wrong (27%), imprecise (50%) or significant information was added (23%). The ability of nine expert clinicians to subcategorise the final diagnosis into the chILD-EU register classification had an overall exact inter-rater agreement of 59% on first assessment and after training, 64%. Only 10% of the 'wrong' answers resulted in allocation to an incorrect category. Subcategorisation proved useful but training is needed for optimal implementation. Conclusions We have shown that chILD-EU has generated a platform to help the clinical assessment of chILD. |
Aparece en las colecciones: | Artigos e Materiais de Revistas Científicas - HC/ICr Artigos e Materiais de Revistas Científicas - IMT Artigos e Materiais de Revistas Científicas - LIM/36 Artigos e Materiais de Revistas Científicas - ODS/03 |
Ficheros en este ítem:
Fichero | Descripción | Tamaño | Formato | |
---|---|---|---|---|
art_GRIESE_International_management_platform_for_childrens_interstitial_lung_disease_2018.PDF Restricted Access | publishedVersion (English) | 784.12 kB | Adobe PDF | Visualizar/Abrir Request a copy |
Los ítems de DSpace están protegidos por copyright, con todos los derechos reservados, a menos que se indique lo contrario.