Please use this identifier to cite or link to this item: https://observatorio.fm.usp.br/handle/OPI/30208
Title: International management platform for children's interstitial lung disease (chILD-EU)
Authors: GRIESE, MatthiasSEIDL, EliasHENGST, MeikeREU, SimoneROCK, HansANTHONY, GiselaKIPER, NuralEMIRALIOGLU, NagehanSNIJDERS, DeborahGOLDBECK, LutzLEIDL, ReinerLEY-ZAPOROZHAN, JuliaKRUEGER-STOLLFUSS, IngridKAMMER, BirgitWESSELAK, TraudlEISMANN, ClaudiaSCHAMS, AndreaNEUNER, DoertheMACLEAN, MoragNICHOLSON, Andrew G.LAUREN, McCannCLEMENT, AnnickEPAUD, RalphBLIC, Jacques deASHWORTH, MichaelAURORA, PaulCALDER, AlistairWETZKE, MartinKAPPLER, MatthiasCUNNINGHAM, SteveSCHWERK, NicolausBUSH, Andy
Citation: THORAX, v.73, n.3, p.231-239, 2018
Abstract: 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.
Appears in Collections:

Artigos e Materiais de Revistas Científicas - HC/ICr
Instituto da Criança - HC/ICr

Artigos e Materiais de Revistas Científicas - IMT
Instituto de Medicina Tropical - IMT

Artigos e Materiais de Revistas Científicas - LIM/36
LIM/36 - Laboratório de Pediatria Clínica

Artigos e Materiais de Revistas Científicas - ODS/03
ODS/03 - Saúde e bem-estar


Files in This Item:
File Description SizeFormat 
art_GRIESE_International_management_platform_for_childrens_interstitial_lung_disease_2018.PDF
  Restricted Access
publishedVersion (English)784.12 kBAdobe PDFView/Open Request a copy

Items in DSpace are protected by copyright, with all rights reserved, unless otherwise indicated.