Assessing gastro-intestinal related quality of life in cystic fibrosis: Validation of PedsQL GI in children and their parents.
<h4>Background</h4>Most patients with cystic fibrosis (CF) suffer from pancreatic insufficiency, leading to fat malabsorption, malnutrition and abdominal discomfort. Until recently, no specific tool was available for assessing gastro-intestinal related quality of life (GI QOL) in patient...
| Main Authors: | , , , , , , , , , , , , , , , , , , , , , , , |
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| Format: | Article |
| Language: | English |
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Public Library of Science (PLoS)
2019-01-01
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| Series: | PLoS ONE |
| Online Access: | https://doi.org/10.1371/journal.pone.0225004 |
| _version_ | 1819028723409616896 |
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| author | Mieke Boon Ine Claes Trudy Havermans Victoria Fornés-Ferrer Joaquim Calvo-Lerma Inês Asseiceira Anna Bulfamante María Garriga Etna Masip Sandra Woodcock Sylvia Walet Celeste Barreto Carla Colombo Paula Crespo Els Van der Wiel Jessie Hulst Sandra Martinez-Barona Rita Nobili Luisa Pereira Mar Ruperto Saioa Vicente Kris De Boeck Carmen Ribes-Koninckx MyCyFAPP consortium |
| author_facet | Mieke Boon Ine Claes Trudy Havermans Victoria Fornés-Ferrer Joaquim Calvo-Lerma Inês Asseiceira Anna Bulfamante María Garriga Etna Masip Sandra Woodcock Sylvia Walet Celeste Barreto Carla Colombo Paula Crespo Els Van der Wiel Jessie Hulst Sandra Martinez-Barona Rita Nobili Luisa Pereira Mar Ruperto Saioa Vicente Kris De Boeck Carmen Ribes-Koninckx MyCyFAPP consortium |
| author_sort | Mieke Boon |
| collection | DOAJ |
| description | <h4>Background</h4>Most patients with cystic fibrosis (CF) suffer from pancreatic insufficiency, leading to fat malabsorption, malnutrition and abdominal discomfort. Until recently, no specific tool was available for assessing gastro-intestinal related quality of life (GI QOL) in patients with CF. As the Horizon2020 project MyCyFAPP aims to improve GI QOL by using a newly designed mobile application, a sensitive and reliable outcome measure was needed. We aimed to study the applicability of the existing child-specific Pediatric Quality of Life Inventory, Gastrointestinal Symptoms Scales and Module (PedsQL GI) in children with CF.<h4>Methods</h4>A multicenter, prospective observational study was performed in 6 European centers to validate the PedsQL GI in children with CF during 3 months.<h4>Results</h4>In total, 248 children and their parents were included. Within-patient variability of PedsQL GI was low (24.11), and there was reasonable agreement between children and parents (ICC 0.681). Nine of 14 subscales were informative (no ceiling effect). The PedsQL GI and the median scores for 4 subscales were significantly lower in patients compared to healthy controls. Positive associations were found between PedsQL GI and age (OR = 1.044, p = 0.004) and between PedsQL GI and BMI z-score (OR = 1.127, p = 0.036). PedsQL GI correlated with most CFQ-R subscales (r 0.268 to 0.623) and with a Visual Analogue Scale (r = 0.20).<h4>Conclusions</h4>PedsQL GI is a valid and applicable instrument to assess GI QOL in children with CF. Future research efforts should examine the responsiveness of the CF PedsQL GI to change in the context of clinical interventions and trials. |
| first_indexed | 2024-12-21T06:02:54Z |
| format | Article |
| id | doaj.art-fb2148c0128645daa4854213e6429b2e |
| institution | Directory Open Access Journal |
| issn | 1932-6203 |
| language | English |
| last_indexed | 2024-12-21T06:02:54Z |
| publishDate | 2019-01-01 |
| publisher | Public Library of Science (PLoS) |
| record_format | Article |
| series | PLoS ONE |
| spelling | doaj.art-fb2148c0128645daa4854213e6429b2e2022-12-21T19:13:43ZengPublic Library of Science (PLoS)PLoS ONE1932-62032019-01-011412e022500410.1371/journal.pone.0225004Assessing gastro-intestinal related quality of life in cystic fibrosis: Validation of PedsQL GI in children and their parents.Mieke BoonIne ClaesTrudy HavermansVictoria Fornés-FerrerJoaquim Calvo-LermaInês AsseiceiraAnna BulfamanteMaría GarrigaEtna MasipSandra WoodcockSylvia WaletCeleste BarretoCarla ColomboPaula CrespoEls Van der WielJessie HulstSandra Martinez-BaronaRita NobiliLuisa PereiraMar RupertoSaioa VicenteKris De BoeckCarmen Ribes-KoninckxMyCyFAPP consortium<h4>Background</h4>Most patients with cystic fibrosis (CF) suffer from pancreatic insufficiency, leading to fat malabsorption, malnutrition and abdominal discomfort. Until recently, no specific tool was available for assessing gastro-intestinal related quality of life (GI QOL) in patients with CF. As the Horizon2020 project MyCyFAPP aims to improve GI QOL by using a newly designed mobile application, a sensitive and reliable outcome measure was needed. We aimed to study the applicability of the existing child-specific Pediatric Quality of Life Inventory, Gastrointestinal Symptoms Scales and Module (PedsQL GI) in children with CF.<h4>Methods</h4>A multicenter, prospective observational study was performed in 6 European centers to validate the PedsQL GI in children with CF during 3 months.<h4>Results</h4>In total, 248 children and their parents were included. Within-patient variability of PedsQL GI was low (24.11), and there was reasonable agreement between children and parents (ICC 0.681). Nine of 14 subscales were informative (no ceiling effect). The PedsQL GI and the median scores for 4 subscales were significantly lower in patients compared to healthy controls. Positive associations were found between PedsQL GI and age (OR = 1.044, p = 0.004) and between PedsQL GI and BMI z-score (OR = 1.127, p = 0.036). PedsQL GI correlated with most CFQ-R subscales (r 0.268 to 0.623) and with a Visual Analogue Scale (r = 0.20).<h4>Conclusions</h4>PedsQL GI is a valid and applicable instrument to assess GI QOL in children with CF. Future research efforts should examine the responsiveness of the CF PedsQL GI to change in the context of clinical interventions and trials.https://doi.org/10.1371/journal.pone.0225004 |
| spellingShingle | Mieke Boon Ine Claes Trudy Havermans Victoria Fornés-Ferrer Joaquim Calvo-Lerma Inês Asseiceira Anna Bulfamante María Garriga Etna Masip Sandra Woodcock Sylvia Walet Celeste Barreto Carla Colombo Paula Crespo Els Van der Wiel Jessie Hulst Sandra Martinez-Barona Rita Nobili Luisa Pereira Mar Ruperto Saioa Vicente Kris De Boeck Carmen Ribes-Koninckx MyCyFAPP consortium Assessing gastro-intestinal related quality of life in cystic fibrosis: Validation of PedsQL GI in children and their parents. PLoS ONE |
| title | Assessing gastro-intestinal related quality of life in cystic fibrosis: Validation of PedsQL GI in children and their parents. |
| title_full | Assessing gastro-intestinal related quality of life in cystic fibrosis: Validation of PedsQL GI in children and their parents. |
| title_fullStr | Assessing gastro-intestinal related quality of life in cystic fibrosis: Validation of PedsQL GI in children and their parents. |
| title_full_unstemmed | Assessing gastro-intestinal related quality of life in cystic fibrosis: Validation of PedsQL GI in children and their parents. |
| title_short | Assessing gastro-intestinal related quality of life in cystic fibrosis: Validation of PedsQL GI in children and their parents. |
| title_sort | assessing gastro intestinal related quality of life in cystic fibrosis validation of pedsql gi in children and their parents |
| url | https://doi.org/10.1371/journal.pone.0225004 |
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