Health-related quality scores in childhood interstitial lung disease: Good agreement between patient and caregiver reports
Introduction Childhood interstitial lung disease (chILD) is a heterogeneous group of mostly chronic respiratory disorders. Assessment of health-related quality of life (HrQoL) in chILD has become increasingly important in clinical care and research. The aim of this study was to assess differences be...
Gespeichert in:
| Hauptverfasser: | , , , , , , , , , , , , , |
|---|---|
| Dokumenttyp: | Article (Journal) |
| Sprache: | Englisch |
| Veröffentlicht: |
October 2024
|
| In: |
Pediatric pulmonology
Year: 2024, Jahrgang: 59, Heft: 10, Pages: 2572-2579 |
| ISSN: | 1099-0496 |
| DOI: | 10.1002/ppul.27069 |
| Online-Zugang: | Verlag, kostenfrei, Volltext: https://doi.org/10.1002/ppul.27069 Verlag, kostenfrei, Volltext: https://onlinelibrary.wiley.com/doi/abs/10.1002/ppul.27069 
|
| Verfasserangaben: | Matthias Griese MD, Nicolaus Schwerk MD, Julia Carlens MD, Martin Wetzke MD, Nagehan Emiralioglu MD, Nural Kiper MD, Honorata Marczak MD, Joanna Lange MD, Katarzyna Krenke MD, Nicola Ullmann MD, Dora Krikovszky MD, Susanne Hämmerling MD, Holger Köster MD, The chILD EU Collaborators, Elias Seidl MD |
MARC
| LEADER | 00000caa a2200000 c 4500 | ||
|---|---|---|---|
| 001 | 1915398665 | ||
| 003 | DE-627 | ||
| 005 | 20250716223829.0 | ||
| 007 | cr uuu---uuuuu | ||
| 008 | 250122s2024 xx |||||o 00| ||eng c | ||
| 024 | 7 | |a 10.1002/ppul.27069 |2 doi | |
| 035 | |a (DE-627)1915398665 | ||
| 035 | |a (DE-599)KXP1915398665 | ||
| 035 | |a (OCoLC)1528017075 | ||
| 040 | |a DE-627 |b ger |c DE-627 |e rda | ||
| 041 | |a eng | ||
| 084 | |a 33 |2 sdnb | ||
| 100 | 1 | |a Griese, Matthias |e VerfasserIn |0 (DE-588)17210565X |0 (DE-627)673143449 |0 (DE-576)167961292 |4 aut | |
| 245 | 1 | 0 | |a Health-related quality scores in childhood interstitial lung disease |b Good agreement between patient and caregiver reports |c Matthias Griese MD, Nicolaus Schwerk MD, Julia Carlens MD, Martin Wetzke MD, Nagehan Emiralioglu MD, Nural Kiper MD, Honorata Marczak MD, Joanna Lange MD, Katarzyna Krenke MD, Nicola Ullmann MD, Dora Krikovszky MD, Susanne Hämmerling MD, Holger Köster MD, The chILD EU Collaborators, Elias Seidl MD |
| 264 | 1 | |c October 2024 | |
| 300 | |b Illustrationen | ||
| 300 | |a 8 | ||
| 336 | |a Text |b txt |2 rdacontent | ||
| 337 | |a Computermedien |b c |2 rdamedia | ||
| 338 | |a Online-Ressource |b cr |2 rdacarrier | ||
| 500 | |a Online veröffentlicht: 5. Juni 2024 | ||
| 500 | |a Gesehen am 22.01.2025 | ||
| 520 | |a Introduction Childhood interstitial lung disease (chILD) is a heterogeneous group of mostly chronic respiratory disorders. Assessment of health-related 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-reported (self) and caregiver-reported (proxy) HrQoL scores. Methods This study used data obtained from the chILD-EU 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-specific HrQoL questionnaires. HrQoL data entered at baseline were used to compare self- and proxy-reported HrQoL scores. For the longitudinal analysis, we compared HrQoL scores between the baseline and the next follow-up visit. Results No differences between patient- and caregiver-reported HrQoL scores were found for school functioning, chILD-specific questionnaire score, and physical health summary score. Self-reported HrQoL scores were higher for the subscales emotional functioning (77.4 vs. 70.7; p < .001), social functioning (81.9 vs. 76.2; p < .001), as well as psycho-social summary score (76.5 vs. 71.8; p < .001) and total score (74.7 vs. 70.8; <.001). The longitudinal analysis showed that a significant change in a patient-reported HrQoL score resulted in a significant change in a caregiver-reported HrQoL score after a mean time of 11.0 months (SD 9.4). Conclusions We found a good agreement between children- and caregiver-related 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. | ||
| 650 | 4 | |a childhood interstitial lung disease | |
| 650 | 4 | |a health related quality of life | |
| 700 | 1 | |a Schwerk, Nicolaus |e VerfasserIn |4 aut | |
| 700 | 1 | |a Carlens, Julia |e VerfasserIn |4 aut | |
| 700 | 1 | |a Wetzke, Martin |e VerfasserIn |4 aut | |
| 700 | 1 | |a Emiralioglu, Nagehan |e VerfasserIn |4 aut | |
| 700 | 1 | |a Kiper, Nural |e VerfasserIn |4 aut | |
| 700 | 1 | |a Marczak, Honorata |e VerfasserIn |4 aut | |
| 700 | 1 | |a Lange, Joanna |e VerfasserIn |4 aut | |
| 700 | 1 | |a Krenke, Katarzyna |e VerfasserIn |4 aut | |
| 700 | 1 | |a Ullmann, Nicola |e VerfasserIn |4 aut | |
| 700 | 1 | |a Krikovszky, Dora |e VerfasserIn |4 aut | |
| 700 | 1 | |a Hämmerling, Susanne Hedwig |d 1978- |e VerfasserIn |0 (DE-588)13711902X |0 (DE-627)694895296 |0 (DE-576)302153942 |4 aut | |
| 700 | 1 | |a Köster, Holger |e VerfasserIn |4 aut | |
| 700 | 1 | |a Seidl, Elias |e VerfasserIn |4 aut | |
| 773 | 0 | 8 | |i Enthalten in |t Pediatric pulmonology |d New York, NY [u.a.] : Wiley-Liss, 1985 |g 59(2024), 10 vom: Okt., Seite 2572-2579 |h Online-Ressource |w (DE-627)302718818 |w (DE-600)1491904-7 |w (DE-576)079876676 |x 1099-0496 |7 nnas |a Health-related quality scores in childhood interstitial lung disease Good agreement between patient and caregiver reports |
| 773 | 1 | 8 | |g volume:59 |g year:2024 |g number:10 |g month:10 |g pages:2572-2579 |g extent:8 |a Health-related quality scores in childhood interstitial lung disease Good agreement between patient and caregiver reports |
| 856 | 4 | 0 | |u https://doi.org/10.1002/ppul.27069 |x Verlag |x Resolving-System |z kostenfrei |3 Volltext |
| 856 | 4 | 0 | |u https://onlinelibrary.wiley.com/doi/abs/10.1002/ppul.27069 |x Verlag |z kostenfrei |3 Volltext |
| 951 | |a AR | ||
| 992 | |a 20250122 | ||
| 993 | |a Article | ||
| 994 | |a 2024 | ||
| 998 | |g 13711902X |a Hämmerling, Susanne Hedwig |m 13711902X:Hämmerling, Susanne Hedwig |d 910000 |d 910500 |e 910000PH13711902X |e 910500PH13711902X |k 0/910000/ |k 1/910000/910500/ |p 12 | ||
| 999 | |a KXP-PPN1915398665 |e 4655135360 | ||
| BIB | |a Y | ||
| SER | |a journal | ||
| JSO | |a {"title":[{"title":"Health-related quality scores in childhood interstitial lung disease","subtitle":"Good agreement between patient and caregiver reports","title_sort":"Health-related quality scores in childhood interstitial lung disease"}],"person":[{"display":"Griese, Matthias","roleDisplay":"VerfasserIn","role":"aut","family":"Griese","given":"Matthias"},{"family":"Schwerk","given":"Nicolaus","roleDisplay":"VerfasserIn","display":"Schwerk, Nicolaus","role":"aut"},{"family":"Carlens","given":"Julia","display":"Carlens, Julia","roleDisplay":"VerfasserIn","role":"aut"},{"given":"Martin","family":"Wetzke","role":"aut","display":"Wetzke, Martin","roleDisplay":"VerfasserIn"},{"roleDisplay":"VerfasserIn","display":"Emiralioglu, Nagehan","role":"aut","family":"Emiralioglu","given":"Nagehan"},{"display":"Kiper, Nural","roleDisplay":"VerfasserIn","role":"aut","family":"Kiper","given":"Nural"},{"given":"Honorata","family":"Marczak","role":"aut","roleDisplay":"VerfasserIn","display":"Marczak, Honorata"},{"given":"Joanna","family":"Lange","role":"aut","display":"Lange, Joanna","roleDisplay":"VerfasserIn"},{"role":"aut","roleDisplay":"VerfasserIn","display":"Krenke, Katarzyna","given":"Katarzyna","family":"Krenke"},{"display":"Ullmann, Nicola","roleDisplay":"VerfasserIn","role":"aut","family":"Ullmann","given":"Nicola"},{"given":"Dora","family":"Krikovszky","role":"aut","roleDisplay":"VerfasserIn","display":"Krikovszky, Dora"},{"given":"Susanne Hedwig","family":"Hämmerling","role":"aut","roleDisplay":"VerfasserIn","display":"Hämmerling, Susanne Hedwig"},{"family":"Köster","given":"Holger","display":"Köster, Holger","roleDisplay":"VerfasserIn","role":"aut"},{"role":"aut","roleDisplay":"VerfasserIn","display":"Seidl, Elias","given":"Elias","family":"Seidl"}],"note":["Online veröffentlicht: 5. Juni 2024","Gesehen am 22.01.2025"],"type":{"bibl":"article-journal","media":"Online-Ressource"},"language":["eng"],"recId":"1915398665","origin":[{"dateIssuedDisp":"October 2024","dateIssuedKey":"2024"}],"id":{"eki":["1915398665"],"doi":["10.1002/ppul.27069"]},"name":{"displayForm":["Matthias Griese MD, Nicolaus Schwerk MD, Julia Carlens MD, Martin Wetzke MD, Nagehan Emiralioglu MD, Nural Kiper MD, Honorata Marczak MD, Joanna Lange MD, Katarzyna Krenke MD, Nicola Ullmann MD, Dora Krikovszky MD, Susanne Hämmerling MD, Holger Köster MD, The chILD EU Collaborators, Elias Seidl MD"]},"physDesc":[{"extent":"8 S.","noteIll":"Illustrationen"}],"relHost":[{"disp":"Health-related quality scores in childhood interstitial lung disease Good agreement between patient and caregiver reportsPediatric pulmonology","note":["Gesehen am 09.10.09"],"type":{"media":"Online-Ressource","bibl":"periodical"},"language":["eng"],"recId":"302718818","pubHistory":["1.1985 -"],"part":{"extent":"8","text":"59(2024), 10 vom: Okt., Seite 2572-2579","volume":"59","issue":"10","pages":"2572-2579","year":"2024"},"title":[{"title_sort":"Pediatric pulmonology","title":"Pediatric pulmonology"}],"physDesc":[{"extent":"Online-Ressource"}],"origin":[{"publisherPlace":"New York, NY [u.a.]","dateIssuedDisp":"1985-","dateIssuedKey":"1985","publisher":"Wiley-Liss"}],"id":{"doi":["10.1002/(ISSN)1099-0496"],"eki":["302718818"],"zdb":["1491904-7"],"issn":["1099-0496"]}}]} | ||
| SRT | |a GRIESEMATTHEALTHRELA2024 | ||