{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,11,5]],"date-time":"2026-11-05T11:23:51Z","timestamp":1793877831214,"version":"4.7.0"},"reference-count":32,"publisher":"Wiley","issue":"10","license":[{"start":{"date-parts":[[2024,6,5]],"date-time":"2024-06-05T00:00:00Z","timestamp":1717545600000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by-nc-nd\/4.0\/"}],"funder":[{"DOI":"10.13039\/100011102","name":"Seventh Framework Programme","doi-asserted-by":"publisher","award":["305653\u2010chILD\u2010EU"],"award-info":[{"award-number":["305653\u2010chILD\u2010EU"]}],"id":[{"id":"10.13039\/100011102","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/501100001659","name":"Deutsche Forschungsgemeinschaft","doi-asserted-by":"publisher","award":["Gr970\/9\u20102"],"award-info":[{"award-number":["Gr970\/9\u20102"]}],"id":[{"id":"10.13039\/501100001659","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Pediatric Pulmonology"],"published-print":{"date-parts":[[2024,10]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec><jats:title>Introduction<\/jats:title><jats:p>Childhood interstitial lung disease (chILD) is a heterogeneous group of mostly chronic respiratory disorders. Assessment of health\u2010related quality of life (HrQoL) in chILD has become increasingly important in clinical care and research. The aim of this study was to assess differences between patient\u2010reported (self) and caregiver\u2010reported (proxy) HrQoL scores.<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>This study used data obtained from the chILD\u2010EU Register. After inclusion (baseline), the patient's health status was followed up at predefined study visits. At each study visit, caregivers and patients were handed validated, age\u2010specific HrQoL questionnaires. HrQoL data entered at baseline were used to compare self\u2010 and proxy\u2010reported HrQoL scores. For the longitudinal analysis, we compared HrQoL scores between the baseline and the next follow\u2010up visit.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>No differences between patient\u2010 and caregiver\u2010reported HrQoL scores were found for school functioning, chILD\u2010specific questionnaire score, and physical health summary score. Self\u2010reported HrQoL scores were higher for the subscales emotional functioning (77.4 vs. 70.7; <jats:italic>p<\/jats:italic>\u2009&lt;\u2009.001), social functioning (81.9 vs. 76.2; <jats:italic>p<\/jats:italic>\u2009&lt;\u2009.001), as well as psycho\u2010social summary score (76.5 vs. 71.8; <jats:italic>p<\/jats:italic>\u2009&lt;\u2009.001) and total score (74.7 vs. 70.8; &lt;.001). The longitudinal analysis showed that a significant change in a patient\u2010reported HrQoL score resulted in a significant change in a caregiver\u2010reported HrQoL score after a mean time of 11.0 months (SD 9.4).<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusions<\/jats:title><jats:p>We found a good agreement between children\u2010 and caregiver\u2010related HrQoL scores. In chILD, caregivers are able to sense changes in children's HrQoL scores over time and may be used as a proxy for children unable to complete HrQoL questionnaires.<\/jats:p><\/jats:sec>","DOI":"10.1002\/ppul.27069","type":"journal-article","created":{"date-parts":[[2024,6,5]],"date-time":"2024-06-05T13:33:07Z","timestamp":1717594387000},"page":"2572-2579","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":6,"title":["Health\u2010related quality scores in childhood interstitial lung disease: Good agreement between patient and caregiver reports"],"prefix":"10.1002","volume":"59","author":[{"ORCID":"https:\/\/orcid.org\/0000-0003-0113-912X","authenticated-orcid":false,"given":"Matthias","family":"Griese","sequence":"first","affiliation":[{"name":"Department of Pediatrics, German Center for Lung Research (DZL), Dr. von Hauner Children's Hospital University Hospital, LMU Munich Munich 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Hannover Medical School German Center for Lung Research Hannover Germany"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-1405-8401","authenticated-orcid":false,"given":"Nagehan","family":"Emiralioglu","sequence":"additional","affiliation":[{"name":"Division of Pediatric Pulmonology Hacettepe University Faculty of Medicine Ankara Turkey"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-1261-7393","authenticated-orcid":false,"given":"Nural","family":"Kiper","sequence":"additional","affiliation":[{"name":"Division of Pediatric Pulmonology Hacettepe University Faculty of Medicine Ankara Turkey"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-7455-4362","authenticated-orcid":false,"given":"Honorata","family":"Marczak","sequence":"additional","affiliation":[{"name":"Department of Pediatric Pneumology and Allergy Medical University of Warsaw Warsaw 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