Innovative approach for self-management and social welfare of children with cystic fibrosis in Europe: Development, validation and implementation of an mHealth tool (MyCyFAPP)

Joaquim Calvo-Lerma, Celia P. Martinez-Jimenez, Juan Pablo Lázaro-Ramos, Ana Andrés, Paula Crespo-Escobar, Erlend Stav, Cornelia Schauber, Lucia Pannese, Jessie M. Hulst, Lucrecia Suárez, Carla Colombo, Celeste Barreto, Kris De Boeck, Carmen Ribes-Koninckx

Research output: Contribution to journalArticle

Abstract

Introduction: For the optimal management of children with cystic fibrosis, there are currently no efficient tools for the precise adjustment of pancreatic enzyme replacement therapy, either for advice on appropriate dietary intake or for achieving an optimal nutrition status. Therefore, we aim to develop a mobile application that ensures a successful nutritional therapy in children with cystic fibrosis. Methods and analysis: A multidisciplinary team of 12 partners coordinate their efforts in 9 work packages that cover the entire so-called 'from laboratory to market' approach by means of an original and innovative co-design process. A cohort of 200 patients with cystic fibrosis aged 1-17 years are enrolled. We will develop an innovative, clinically tested mobile health application for patients and health professionals involved in cystic fibrosis management. The mobile application integrates the research knowledge and innovative tools for maximising self-management with the aim of leading to a better nutritional status, quality of life and disease prognosis. Bringing together different and complementary areas of knowledge is fundamental for tackling complex challenges in disease treatment, such as optimal nutrition and pancreatic enzyme replacement therapy in cystic fibrosis. Patients are expected to benefit the most from the outcomes of this innovative project. Ethics and dissemination: The project is approved by the Ethics Committee of the coordinating organisation, Hospital Universitari La Fe (Ref: 2014/ 0484). Scientific findings will be disseminated via journals and conferences addressed to clinicians, food scientists, information and communications technology experts and patients. The specific dissemination working group within the project will address the wide audience communication through the website (http://www.mycyfapp.eu), the social networks and the newsletter.

Original languageEnglish
Article numbere014931
JournalBMJ Open
Volume7
Issue number3
DOIs
Publication statusPublished - Mar 1 2017

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ASJC Scopus subject areas

  • Medicine(all)

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Calvo-Lerma, J., Martinez-Jimenez, C. P., Lázaro-Ramos, J. P., Andrés, A., Crespo-Escobar, P., Stav, E., Schauber, C., Pannese, L., Hulst, J. M., Suárez, L., Colombo, C., Barreto, C., De Boeck, K., & Ribes-Koninckx, C. (2017). Innovative approach for self-management and social welfare of children with cystic fibrosis in Europe: Development, validation and implementation of an mHealth tool (MyCyFAPP). BMJ Open, 7(3), [e014931]. https://doi.org/10.1136/bmjopen-2016-014931