Use of a mobile application for self-management of pancreatic enzyme replacement therapy is associated with improved gastro-intestinal related quality of life in children with Cystic Fibrosis
| Autor: | Carla Colombo, Jessie M. Hulst, E. Van der Wiel, Carmen Ribes-Koninckx, R. Nobili, Celeste Barreto, I. Asseiceira, Anna Bulfamante, Joaquim Calvo-Lerma, Luísa Pereira, J.G. Mainz, Mieke Boon, B.A.M. van Schijndel, Etna Masip, Victoria Fornés, María Garriga, P. Crespo, M. Ruperto, K. De Boeck, Hettie M. Janssens, Peter Witters, I. Claes, Trudy Havermans, Saioa Vicente |
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| Přispěvatelé: | Pediatrics |
| Jazyk: | angličtina |
| Rok vydání: | 2020 |
| Předmět: |
Quality of life
Male 0301 basic medicine Pulmonary and Respiratory Medicine medicine.medical_specialty Cystic Fibrosis Gastrointestinal Diseases Visual analogue scale Mobile application Context (language use) PedsQL GI Cystic fibrosis CFAbd-Score 03 medical and health sciences 0302 clinical medicine Malabsorption Syndromes Surveys and Questionnaires Internal medicine medicine Humans Enzyme Replacement Therapy Child business.industry Self-Management Malnutrition medicine.disease Mobile Applications Abdominal Pain Fat malabsorption Clinical trial 030104 developmental biology 030228 respiratory system Pediatrics Perinatology and Child Health PERT Quality of Life Exocrine Pancreatic Insufficiency Female MyCyFAPP Pancreatic insufficiency business Body mass index |
| Zdroj: | Journal of Cystic Fibrosis, 19(4), 562-568. Elsevier Journal of cystic fibrosis : official journal of the European Cystic Fibrosis Society r-IIS La Fe. Repositorio Institucional de Producción Científica del Instituto de Investigación Sanitaria La Fe instname |
| ISSN: | 1569-1993 |
| Popis: | Background: Most patients with cystic fibrosis (CF) suffer from pancreatic insufficiency (PI), leading to fat malabsorption, malnutrition, abdominal discomfort and impaired growth. Pancreatic enzyme replacement therapy (PERT) is effective, but evidence based guidelines for dose adjustment are lacking. A mobile app for self-management of PERT was developed in the context of the HORIZON 2020 project MyCyFAPP. It contains an algorithm to calculate individual PERT-doses for optimal fat digestion, based on in vitro and in vivo studies carried out in the same project. In addition, the app includes a symptoms diary, educational material, and it is linked to a web tool allowing health care professionals to evaluate patient's data and provide feedback. Methods: A 6-month open label prospective multicenter interventional clinical trial was performed to assess effects of using the app on gastro-intestinal related quality of life (GI QOL), measured by the CF-PedsQL-GI (shortened, CF specific version of the Pediatric Quality of Life Inventory, Gastrointestinal Symptoms Module). Results: One hundred and seventy-one patients with CF and PI between 2 and 18 years were recruited at 6 European CF centers. Self-reported CF-PedsQL-GI improved significantly from month 0 (M0) (84.3, 76.4-90.3) to month 6 (M6) (89.4, 80.35-93.5) (p |
| Databáze: | OpenAIRE |
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