{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,2,19]],"date-time":"2026-02-19T22:52:54Z","timestamp":1771541574513,"version":"3.50.1"},"reference-count":44,"publisher":"European Respiratory Society (ERS)","issue":"2","license":[{"start":{"date-parts":[[2025,12,5]],"date-time":"2025-12-05T00:00:00Z","timestamp":1764892800000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/publications.ersnet.org\/user-licence"}],"funder":[{"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"}]},{"DOI":"10.13039\/501100000921","name":"European Cooperation in Science and Technology","doi-asserted-by":"publisher","award":["COST 16125"],"award-info":[{"award-number":["COST 16125"]}],"id":[{"id":"10.13039\/501100000921","id-type":"DOI","asserted-by":"publisher"}]},{"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\/100008593","name":"European Respiratory Society","doi-asserted-by":"publisher","award":["chILD EU Clinical Research Collaboration"],"award-info":[{"award-number":["chILD EU Clinical Research Collaboration"]}],"id":[{"id":"10.13039\/100008593","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["publications.ersnet.org"],"crossmark-restriction":true},"short-container-title":["Eur Respir J"],"accepted":{"date-parts":[[2025,10,7]]},"published-print":{"date-parts":[[2026,2]]},"abstract":"<jats:sec>\n                    <jats:title>Background<\/jats:title>\n                    <jats:p>Childhood interstitial lung diseases (chILD) encompass a diverse group of rare, chronic respiratory disorders. While treatment options are limited, evaluating health-related quality of life (HRQoL) has become a vital approach for clinical monitoring. This study aims to enhance our understanding of the medical and sociodemographic factors influencing HRQoL in chILD.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>This study used prospectively obtained data from the chILD-EU Register. Caregivers were handed validated, age-specific HRQoL questionnaires (the chILD-specific questionnaire and the generic Pediatric Quality of Life Questionnaire (PedsQL) 4.0 questionnaire). The scores were linearly transformed from a 5-point scale to a percentage scale ranging from 0% to 100%. We used exploratory univariate analyses and multivariable ordinary least squares (OLS) regression models on cross-sectional data to investigate the associations between subjects\u2019 clinical features and HRQoL scores.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>424 patients from 10 European countries and 48 study sites were included in the final analysis. The most relevant factors associated with lower HRQoL scores for the chILD-specific questionnaire and the PedsQL 4.0 Total Score, as identified in the univariate analysis and confirmed in the multivariable OLS regression model, were \u201cinpatient medical care in the last 3\u2005months\u201d (\u221213.6%; p&lt;0.0001 and \u221211.4%; p&lt;0.0001, respectively) and \u201cfailure to thrive\u201d (\u22129.1%; p=0.0014 and \u221212.1%; p&lt;0.0001, respectively). Among subjects old enough for pulmonary function testing (PFT) (n=162), we observed only a weak correlation between PFT results and different HRQoL scores.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusions<\/jats:title>\n                    <jats:p>The main factors linked to reduced HRQoL scores were prior inpatient treatment and failure to thrive. Further interventional studies should determine whether addressing these factors can enhance HRQoL scores and potentially improve quality of life in chILD.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1183\/13993003.01777-2025","type":"journal-article","created":{"date-parts":[[2025,12,8]],"date-time":"2025-12-08T05:23:42Z","timestamp":1765171422000},"page":"2501777","update-policy":"https:\/\/doi.org\/10.1183\/ers-crossmark-policy","source":"Crossref","is-referenced-by-count":1,"title":["Health-related quality of life in childhood interstitial lung disease"],"prefix":"10.1183","volume":"67","author":[{"ORCID":"https:\/\/orcid.org\/0000-0003-0113-912X","authenticated-orcid":false,"given":"Matthias","family":"Griese","sequence":"first","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Mandy","family":"Niemitz","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Katrin","family":"Erlewein","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-6887-2417","authenticated-orcid":false,"given":"Srdjan","family":"Micic","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Julia","family":"Rodler","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-8578-864X","authenticated-orcid":false,"given":"Julia","family":"Carlens","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Honorata","family":"Marczak","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Joanna","family":"Lange","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-8370-784X","authenticated-orcid":false,"given":"Katarzyna","family":"Krenke","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-1405-8401","authenticated-orcid":false,"given":"Nagehan","family":"Emiralio\u011flu","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Miriam","family":"Rassenhofer","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"J\u00f6rg M.","family":"Fegert","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Steve","family":"Cunningham","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Susanne","family":"H\u00e4mmerling","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Florian","family":"Stehling","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Anna","family":"Zschocke","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-7284-4251","authenticated-orcid":false,"given":"Alexander","family":"M\u00f6ller","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"name":"the chILD-EU collaborators","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Nicolaus","family":"Schwerk","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-6610-3756","authenticated-orcid":false,"given":"Elias","family":"Seidl","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"81","published-online":{"date-parts":[[2025,12,5]]},"reference":[{"key":"2026021902500462000_67.2.2501777.1","doi-asserted-by":"publisher","DOI":"10.1183\/16000617.0100-2017"},{"key":"2026021902500462000_67.2.2501777.2","doi-asserted-by":"crossref","first-page":"1747","DOI":"10.3390\/jcm11061747","article-title":"Etiologic classification of diffuse parenchymal (interstitial) lung diseases","volume":"11","author":"Griese","year":"2022","journal-title":"J Clin Med"},{"key":"2026021902500462000_67.2.2501777.3","doi-asserted-by":"publisher","DOI":"10.1136\/thoraxjnl-2015-207349"},{"key":"2026021902500462000_67.2.2501777.4","doi-asserted-by":"publisher","DOI":"10.1186\/s13023-022-02399-2"},{"key":"2026021902500462000_67.2.2501777.5","doi-asserted-by":"publisher","DOI":"10.1183\/13993003.01512-2022"},{"key":"2026021902500462000_67.2.2501777.6","doi-asserted-by":"publisher","DOI":"10.1023\/A:1012253723272"},{"key":"2026021902500462000_67.2.2501777.7","first-page":"889","article-title":"Measuring disease-specific quality of life in clinical trials","volume":"134","author":"Guyatt","year":"1986","journal-title":"CMAJ"},{"key":"2026021902500462000_67.2.2501777.8","doi-asserted-by":"publisher","DOI":"10.1023\/A:1008853819715"},{"key":"2026021902500462000_67.2.2501777.9","doi-asserted-by":"publisher","DOI":"10.1542\/peds.2016-0833"},{"key":"2026021902500462000_67.2.2501777.10","doi-asserted-by":"crossref","first-page":"954","DOI":"10.1002\/ppul.24018","article-title":"Development and validation of a health-related quality of life questionnaire for pediatric patients with interstitial lung disease","volume":"53","author":"Niemitz","year":"2018","journal-title":"Pediatr Pulmonol"},{"key":"2026021902500462000_67.2.2501777.11","doi-asserted-by":"publisher","DOI":"10.1183\/23120541.00805-2020"},{"key":"2026021902500462000_67.2.2501777.12","doi-asserted-by":"publisher","DOI":"10.1002\/ppul.23168"},{"key":"2026021902500462000_67.2.2501777.13","doi-asserted-by":"crossref","first-page":"828","DOI":"10.1002\/ppul.24308","article-title":"Health-related quality of life in infants and children with interstitial lung disease","volume":"54","author":"Lauby","year":"2019","journal-title":"Pediatr Pulmonol"},{"key":"2026021902500462000_67.2.2501777.14","doi-asserted-by":"publisher","DOI":"10.1164\/rccm.201305-0923ST"},{"key":"2026021902500462000_67.2.2501777.15","doi-asserted-by":"publisher","DOI":"10.1136\/thoraxjnl-2017-210519"},{"key":"2026021902500462000_67.2.2501777.16","doi-asserted-by":"publisher","DOI":"10.1183\/09031936.00195512"},{"key":"2026021902500462000_67.2.2501777.17","doi-asserted-by":"crossref","first-page":"939","DOI":"10.1164\/ajrccm.156.3.9703051","article-title":"Factors influencing survival in children with chronic interstitial lung disease","volume":"156","author":"Fan","year":"1997","journal-title":"Am J Respir Crit Care Med"},{"key":"2026021902500462000_67.2.2501777.18","doi-asserted-by":"publisher","DOI":"10.1002\/ppul.1950160309"},{"key":"2026021902500462000_67.2.2501777.19","first-page":"46","article-title":"FIMA \u2013 Fragebogen zur Erhebung von Gesundheitsleistungen im Alter: Entwicklung und Pilotstudie. [FIMA \u2013 questionnaire for health-related resource use in an elderly population: development and pilot study.]","volume":"77","author":"Seidl","year":"2015","journal-title":"Gesundheitswesen"},{"key":"2026021902500462000_67.2.2501777.20","first-page":"66","article-title":"Validierung des FIMA-Fragebogens zur Inanspruchnahme von Versorgungsleistungen anhand von Routinedaten der Krankenversicherung: Welchen Einfluss hat der Erinnerungszeitraum? [Validation of the FIMA questionnaire for health-related resource use against medical claims data: the role played by length of recall period.]","volume":"83","author":"Seidl","year":"2019","journal-title":"Gesundheitswesen"},{"key":"2026021902500462000_67.2.2501777.21","doi-asserted-by":"publisher","DOI":"10.1023\/B:JOBM.0000028500.53608.2c"},{"key":"2026021902500462000_67.2.2501777.22","doi-asserted-by":"crossref","first-page":"64","DOI":"10.1186\/1477-7525-9-64","article-title":"The Chinese version of the Pediatric Quality of Life InventoryTM (PedsQLTM) 3.0 Asthma Module: reliability and validity","volume":"9","author":"Feng","year":"2011","journal-title":"Health Qual Life Outcomes"},{"key":"2026021902500462000_67.2.2501777.23","doi-asserted-by":"crossref","first-page":"1047","DOI":"10.1007\/s00431-017-2928-6","article-title":"Factors associated with changes in health-related quality of life in children with cystic fibrosis during 1-year follow-up","volume":"176","author":"Van Horck","year":"2017","journal-title":"Eur J Pediatr"},{"key":"2026021902500462000_67.2.2501777.24","doi-asserted-by":"crossref","first-page":"383","DOI":"10.1111\/cea.12827","article-title":"Determinants of longitudinal health-related quality-of-life change in children with asthma from low-income families: a report from the PROMIS Pediatric Asthma Study","volume":"47","author":"Li","year":"2017","journal-title":"Clin Exp Allergy"},{"key":"2026021902500462000_67.2.2501777.25","unstructured":"Cohen J . Statistical Power Analysis for the Behavioral Sciences. 2nd Edn. Hillsdale, Erlbaum, 1988."},{"key":"2026021902500462000_67.2.2501777.26","doi-asserted-by":"publisher","DOI":"10.1136\/thorax-2022-219206"},{"key":"2026021902500462000_67.2.2501777.27","doi-asserted-by":"publisher","DOI":"10.4065\/77.4.371"},{"key":"2026021902500462000_67.2.2501777.28","doi-asserted-by":"publisher","DOI":"10.1016\/0197-2456(89)90005-6"},{"key":"2026021902500462000_67.2.2501777.29","doi-asserted-by":"publisher","DOI":"10.1016\/S0197-2456(05)80026-1"},{"key":"2026021902500462000_67.2.2501777.30","doi-asserted-by":"publisher","DOI":"10.1016\/j.rmed.2009.04.024"},{"key":"2026021902500462000_67.2.2501777.31","doi-asserted-by":"publisher","DOI":"10.1136\/thoraxjnl-2021-217751"},{"key":"2026021902500462000_67.2.2501777.32","unstructured":"OECD . Health at a Glance 2019: OECD Indicators. Paris, OECD, 2019."},{"key":"2026021902500462000_67.2.2501777.33","unstructured":"Kringos DS , Boerma WG , Hutchinson A , et al. Building Primary Care in a Changing Europe. Copenhagen, WHO Regional Office for Europe, 2015."},{"key":"2026021902500462000_67.2.2501777.34","doi-asserted-by":"publisher","DOI":"10.1016\/j.clnu.2016.03.004"},{"key":"2026021902500462000_67.2.2501777.35","doi-asserted-by":"crossref","first-page":"239","DOI":"10.1002\/ncp.10849","article-title":"Nutrition implications of intrinsic restrictive lung disease","volume":"37","author":"Rinaldi","year":"2022","journal-title":"Nutr Clin Pract"},{"key":"2026021902500462000_67.2.2501777.36","doi-asserted-by":"crossref","first-page":"891","DOI":"10.1002\/ncp.10651","article-title":"Exercise capacity and its relationship with body composition and nutrition status in patients with interstitial lung disease","volume":"36","author":"Rinaldi","year":"2021","journal-title":"Nutr Clin Pract"},{"key":"2026021902500462000_67.2.2501777.37","doi-asserted-by":"crossref","first-page":"2702","DOI":"10.1002\/ppul.27102","article-title":"Persistent tachypnea of infancy, neuroendocrine cell hyperplasia of infancy, and pulmonary interstitial glycogenosis: \u201cA3-Specific conditions of undefined etiology\u201d","volume":"59","author":"Griese","year":"2024","journal-title":"Pediatr Pulmonol"},{"key":"2026021902500462000_67.2.2501777.38","doi-asserted-by":"crossref","first-page":"3119","DOI":"10.1002\/ppul.25004","article-title":"Persistent tachypnea of infancy: follow up at school age","volume":"55","author":"Seidl","year":"2020","journal-title":"Pediatr Pulmonol"},{"key":"2026021902500462000_67.2.2501777.39","doi-asserted-by":"publisher","DOI":"10.1136\/thorax-2023-221325"},{"key":"2026021902500462000_67.2.2501777.40","doi-asserted-by":"publisher","DOI":"10.1183\/13993003.01499-2021"},{"key":"2026021902500462000_67.2.2501777.41","doi-asserted-by":"publisher","DOI":"10.2165\/00019053-200624120-00005"},{"key":"2026021902500462000_67.2.2501777.42","doi-asserted-by":"crossref","first-page":"734","DOI":"10.1007\/s00063-007-1092-6","article-title":"Methodische Herausforderungen und Potentiale der Evaluation gesundheitsbezogener Lebensqualit\u00e4t f\u00fcr Kinder mit chronischen Erkrankungen im medizinischen Versorgungssystem. [Methodological challenges and potentials of health-related quality of life evaluation in children with chronic health conditions under medical health care.]","volume":"102","author":"Bullinger","year":"2007","journal-title":"Med Klin"},{"key":"2026021902500462000_67.2.2501777.43","doi-asserted-by":"publisher","DOI":"10.1016\/j.jval.2013.04.004"},{"key":"2026021902500462000_67.2.2501777.44","doi-asserted-by":"crossref","first-page":"2572","DOI":"10.1002\/ppul.27069","article-title":"Health-related quality scores in childhood interstitial lung disease: good agreement between patient and caregiver reports","volume":"59","author":"Griese","year":"2024","journal-title":"Pediatr Pulmonol"}],"container-title":["European Respiratory Journal"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/syndication.highwire.org\/content\/doi\/10.1183\/13993003.01777-2025","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,2,19]],"date-time":"2026-02-19T10:50:16Z","timestamp":1771498216000},"score":1,"resource":{"primary":{"URL":"https:\/\/publications.ersnet.org\/lookup\/doi\/10.1183\/13993003.01777-2025"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2025,12,5]]},"references-count":44,"journal-issue":{"issue":"2","published-online":{"date-parts":[[2026,2,19]]},"published-print":{"date-parts":[[2026,2]]}},"alternative-id":["10.1183\/13993003.01777-2025"],"URL":"https:\/\/doi.org\/10.1183\/13993003.01777-2025","relation":{},"ISSN":["0903-1936","1399-3003"],"issn-type":[{"value":"0903-1936","type":"print"},{"value":"1399-3003","type":"electronic"}],"subject":[],"published":{"date-parts":[[2025,12,5]]}}}