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.
Background: Remote care services and patient empowerment have boosted mobile health (mHealth). A study of user needs related to mHealth for pediatric cystic fibrosis (PCF) identified the set of preferred features mobile apps should support; however, the potential use of PCF apps and their suitability to fit into PCF clinical management remains unexplored. Objective: We examine whether PCF holds potential for the implementation of mHealth care. Methods: The study is based on a literature review and qualitative analysis of content and was conducted in two parts: (1) we reviewed scientific and gray literature to explore how European countries manage PCF and conducted a qualitative study of 6 PCF units and (2) we performed a systematic review of apps available in the myhealthapps.net repository searching for cystic fibrosis (CF) management and nutrition apps, which we analyzed for characteristics, business models, number of downloads, and usability. Results: European CF routine care guidelines are acknowledged in most European countries, and treatments are fully covered in almost all countries. The majority of teams in CF units are interdisciplinary. With respect to the systematic review of apps, we reviewed 12 apps for CF management and 9 for general nutrition management in the myhealthapps.net directory. All analyzed apps provided functionalities for recording aspects related to the disease and nutrition such as medication, meals, measurements, reminders, and educational material. None of the apps reviewed in this study supported pancreatic enzyme replacement therapy. CF apps proved to be less appealing and usable than nutrition apps (2.66 [SD 1.15] vs 4.01 [SD 0.90]; P<.001, z-value: –2.6). User needs detected in previous research are partially matched by current apps for CF management. Conclusions: The health care context for PCF is a unique opportunity for the adoption of mHealth. Well-established clinical guidelines, heterogeneous clinical teams, and coverage by national health care systems provide a suitable scenario for the use of mHealth solutions. However, available apps for CF self-management do not cover essential aspects such as nutrition and education. To increase the adoption of mHealth for CF self-management, new apps should include these features. International Registered Report Identifier (IRRID): RR2-10.1136/bmjopen-2016-014931