We performed a prospective, observational, cohort study of children newly diagnosed with children’s interstitial lung disease (ChILD), with structured follow-up at 4, 8, 12 weeks and 6 and 12 months. 127 children, median age 0.9 (IQR 0.3–7.9) years had dyspnoea (68%, 69/102), tachypnoea (75%, 77/103) and low oxygen saturation (SpO2) median 92% (IQR 88–96). Death (n=20, 16%) was the most common in those <6 months of age with SpO2<94% and developmental/surfactant disorders. We report for the first time that ChILD survivors improved multiple clinical parameters within 8–12 weeks of diagnosis. These data can inform family discussions and support clinical trial measurements.
- Interstitial lung disease in Children
- oxygen saturation
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Collaborators Dr Jayesh Bhatt, Nottingham Children’s Hospital, UK; Dr Frederik Buchvald, Copenhagen University Hospital, Denmark; Dr Nazan Cobanoglu, Ankara University, Turkey; Dr Fran Child, Royal Children’s Hospital, Manchester, UK; Dr Nwokoro Chinedu, Royal London Hospital, UK; Dr Leonard Donato, Colmar, Civil, Strasbourg, France; Ralph Epaud, INSERM 955 - Equipe 5, Paris, France Dr Ampara Escribano, Valencia, Neumologia Inf, Spain Dr Achim Freihorst, Aalen, Ostalb Klinikum, Germany; Dr Atul Gupta, King’s College Hospital, London, UK; Dr Emma Guy, Leeds General Infirmary, UK; Dr Tobias Hübner, Oldenburg, Zentr. Kind-Jugend, Germany; Dr Petra Kaiser-Labusch, Bremen, Klin. Bremen-Mitte, Germany; Dr Christiane Lex, Göttingen University, Germany; Dr Sarah Mayell, Royal Liverpool Children’s Hospital, UK; Dr Samantha Moss, Royal Victoria Infirmary, Newcastle, UK; Dr Nagehan Emiralioglu, Ankara, Hacettepe University, Turkey; Dr Lutz Nährlich, Giessen, Germany; Dr Nadia Nathan, Hôpital Trousseau, Paris, France; Dr Ruth O’Reilly, Sheffield Children’s Hospital, UK; Dr Nicolas Regamey, Luzern, Kinderspital, Switzerland; Dr Isabelle Rochat, Lausanne, Switzerland; Dr Martin Rosewich, Frankfurt/Main, JWG University, Germany; Dr Tugbu Sismanlar, Ankara, Gazi University, Turkey; Dr Deborah Snijders, Padua University, Italy; Dr Florian Stehling, Essen, University, Germany.
Contributors Chief investigator of ChILDEU project: MG. Principle investigator observational study: SC. Developed protocol: SC, CG, MM, ABa, ACle, NK, KKro, AB, NS and MG. Peer review team: PA, MA, ACal, JLZ, AN, SR, TW, AB, NS and MG. Data preparation: JC, MH, KK, KKro, JL and MW. Analysis: SC and CG. Analysis review: AB, NS and MG. Final draft: SC, CG, MM, PA, MA, ABa, ACal, JC, ACle, MH, BK, KKat, NK, KKro, JL, JLZ, AN, SR, TW, MW, AB, NS and MG.
Funding The project was funded by the European Union’s Seventh Framework Program under grant agreement n°305653—child-EU.
Disclaimer The funders had no role in the writing of the manuscript or the decision to submit it for publication.
Competing interests SC and VS report other from Boehringer Ingelheim, outside the submitted work; MG reports other from Vertex and Boehringer Ingelheim, outside the submitted work.
Patient consent for publication Not required.
Provenance and peer review Not commissioned; externally peer reviewed.
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