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Health‐related quality of life in infants and children with interstitial lung disease
Author(s) -
Lauby Clara,
Boelle PierreYves,
Abou Taam Rola,
Bessaci Katia,
Brouard Jacques,
Dalphin MarieLaure,
Delacourt Christophe,
Delestrain Céline,
Deschildre Antoine,
Dubus JeanChristophe,
Fayon Michaël,
GiovanniniChami Lisa,
Houdouin Véronique,
Houzel Anne,
Marguet Christophe,
Pin Isabelle,
Reix Philippe,
Renoux MarieCatherine,
Schweitzer Cyril,
Tatopoulos Aurélie,
Thumerelle Caroline,
Troussier Françoise,
Wanin Stéphanie,
Weiss Laurence,
Clement Annick,
Epaud Ralph,
Nathan Nadia
Publication year - 2019
Publication title -
pediatric pulmonology
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 0.866
H-Index - 106
eISSN - 1099-0496
pISSN - 8755-6863
DOI - 10.1002/ppul.24308
Subject(s) - medicine , quality of life (healthcare) , pediatrics , disease , population , etiology , physical therapy , environmental health , nursing
Interstitial lung disease in children (chILD) is a highly heterogeneous group of rare and severe respiratory disorders. The disease by itself, the burden of the treatments (oxygen therapy, corticosteroid pulses, nutritional support) and recurrent hospitalizations may impair the quality of life (QoL) of these children. The aim of the study was to compare the health‐related QoL (HR‐QoL) in chILD compared to a healthy population and to find out the predictive factors of an altered QoL. Methods Patients aged 1 month to 18 years with ILD of known or unknown etiology were prospectively included. Parents and children over 8 years old were asked to fill the PedsQL 4.0 Generic Core Scale ranging from 0 to 100 points. Results A total of 78 children were recruited in 13 French pediatric centers. Total scores were 11.94 points ( P = 0.0003) less for child self‐report and 14.08 points ( P < 0.0001) less for parent proxy‐report with respect to the healthy population. The clinical factors associated with a lower total score were: extrapulmonary expression of the disease, higher Fan severity score, long‐term oxygen therapy, nutritional support, and a number of oral treatments. Conclusion Using a validated quality of life (QoL) scale, we showed that health‐related‐QoL is significantly impaired in chILD compared with a healthy population. Factors altering QoL score are easy to recognize and could help identify children at a heightened risk of low QoL.