{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,4,1]],"date-time":"2026-04-01T15:47:56Z","timestamp":1775058476583,"version":"3.50.1"},"reference-count":35,"publisher":"Wiley","issue":"7","license":[{"start":{"date-parts":[[2018,4,23]],"date-time":"2018-04-23T00:00:00Z","timestamp":1524441600000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"funder":[{"DOI":"10.13039\/100011102","name":"Seventh Framework Programme","doi-asserted-by":"publisher","award":["305653"],"award-info":[{"award-number":["305653"]}],"id":[{"id":"10.13039\/100011102","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Pediatric Pulmonology"],"published-print":{"date-parts":[[2018,7]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec><jats:title>Purpose<\/jats:title><jats:p>Children's interstitial lung disease (chILD) is often associated with multiple burdens and chronic impairment of health\u2010related quality of life. Patient reported outcomes describe the patients\u2019 perspective on medical conditions and their treatments. We aimed to develop and evaluate the psychometric properties of a chILD\u2010specific PRO (chILD\u2010QoL) as an instrument for monitoring the patients\u2019 health status.<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>Items were generated through focus groups with parents, patients, and interviews with pediatric pulmonologists. After a pretest of the German pilot version, the questionnaire was refined and translated into four European languages. Psychometric properties of the questionnaire were analyzed within a multi\u2010center collaborative throughout Europe involving 180 parents of children with an interstitial lung disease and 65 pediatric patients.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>The final instrument is available in different developmentally adapted versions from infancy to adolescence, comprising between 5 and 11 items. The scales showed high internal consistency (Cronbachs\u2019<jats:italic>\u03b1<\/jats:italic> between 0.85 and 0.94). Convergent validity was indicated by moderate to high correlations (<jats:italic>r<\/jats:italic>\u2009=\u20090.43\u20100.91) with the Pediatric Quality of Life Questionnaire (PedsQL\u2122 4.0 Core module). Lower scores were significantly associated with dyspnoea (<jats:italic>t<\/jats:italic><jats:sub>proxy<\/jats:sub>\u2009=\u20093.18, <jats:italic>P<\/jats:italic>\u2009=\u20090.002), tachypnoea (<jats:italic>t<\/jats:italic><jats:sub>proxy<\/jats:sub>\u2009=\u20092.95, <jats:italic>P\u2009<\/jats:italic>=\u20090.002), and with worse clinical course of lung disease (<jats:italic>t<\/jats:italic><jats:sub>self<\/jats:sub>\u2009=\u20093.96, <jats:italic>P\u2009<\/jats:italic>&lt;\u20090.05) as reported by the physicians.<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusions<\/jats:title><jats:p>The results indicate the reliability and validity of the chILD\u2010QoL for pediatric patients with interstitial lung diseases. It can be used for screening and monitoring subjective health status as perceived by the patients and\/or their caregivers, as well as for evaluation of health\u2010related quality of life in clinical trials and intervention research.<\/jats:p><\/jats:sec>","DOI":"10.1002\/ppul.24018","type":"journal-article","created":{"date-parts":[[2018,4,24]],"date-time":"2018-04-24T05:48:24Z","timestamp":1524548904000},"page":"954-963","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":30,"title":["Development and validation of a health\u2010related quality of life questionnaire for pediatric patients with interstitial lung disease"],"prefix":"10.1002","volume":"53","author":[{"ORCID":"https:\/\/orcid.org\/0000-0003-4449-7736","authenticated-orcid":false,"given":"Mandy","family":"Niemitz","sequence":"first","affiliation":[{"name":"Department of Child and Adolescent Psychiatry\/Psychotherapy University Ulm Medical Centre Ulm Germany"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Nicolaus","family":"Schwerk","sequence":"additional","affiliation":[{"name":"Department of Pediatric Pneumonology, Allergology, Neonatology University Medical Centre Hannover Hannover Germany"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Lutz","family":"Goldbeck","sequence":"additional","affiliation":[{"name":"Department of Child and Adolescent Psychiatry\/Psychotherapy University Ulm Medical Centre Ulm Germany"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-0113-912X","authenticated-orcid":false,"given":"Matthias","family":"Griese","sequence":"additional","affiliation":[{"name":"Department of Pediatric Pneumonology University Munich Munich Bavaria Germany"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"311","published-online":{"date-parts":[[2018,4,23]]},"reference":[{"key":"e_1_2_7_2_1","doi-asserted-by":"publisher","DOI":"10.1186\/s13023-015-0339-1"},{"key":"e_1_2_7_3_1","doi-asserted-by":"publisher","DOI":"10.1002\/ppul.10125"},{"key":"e_1_2_7_4_1","doi-asserted-by":"publisher","DOI":"10.1186\/1750-1172-4-26"},{"key":"e_1_2_7_5_1","doi-asserted-by":"publisher","DOI":"10.1136\/thoraxjnl-2012-203201"},{"key":"e_1_2_7_6_1","doi-asserted-by":"publisher","DOI":"10.1186\/2213-0802-2-4"},{"key":"e_1_2_7_7_1","doi-asserted-by":"publisher","DOI":"10.1097\/MOP.0b013e3283464a37"},{"key":"e_1_2_7_8_1","doi-asserted-by":"publisher","DOI":"10.1164\/rccm.200703-393OC"},{"key":"e_1_2_7_9_1","doi-asserted-by":"publisher","DOI":"10.1590\/S1806-37132010000500007"},{"key":"e_1_2_7_10_1","doi-asserted-by":"publisher","DOI":"10.1007\/s11136-013-0414-9"},{"key":"e_1_2_7_11_1","doi-asserted-by":"publisher","DOI":"10.1016\/S0031-3955(03)00072-5"},{"key":"e_1_2_7_12_1","doi-asserted-by":"publisher","DOI":"10.1097\/00005650-200503000-00008"},{"key":"e_1_2_7_13_1","doi-asserted-by":"publisher","DOI":"10.1023\/A:1008853819715"},{"key":"e_1_2_7_14_1","doi-asserted-by":"publisher","DOI":"10.1007\/s10389-006-0066-0"},{"key":"e_1_2_7_15_1","doi-asserted-by":"publisher","DOI":"10.1017\/S1047951117000440"},{"key":"e_1_2_7_16_1","unstructured":"Food and Drug Administration (FDA). 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