Abstract
BackgroundRemote 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.ObjectiveWe examine whether PCF holds potential for the implementation of mHealth care.MethodsThe 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.ResultsEuropean 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.ConclusionsThe 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
Highlights
Pediatric cystic fibrosis (PCF) is a childhood-onset inherited disease characterized by progressive lung and pancreas deterioration, leading to premature death
The health care context for pediatric cystic fibrosis (PCF) is a unique opportunity for the adoption of mobile health (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
Summary
Pediatric cystic fibrosis (PCF) is a childhood-onset inherited disease characterized by progressive lung and pancreas deterioration, leading to premature death. The primary pillars of proper CF management include a continuum of care and treatment in which the following goals are highlighted: (1) maintaining lung functions as near to normal as possible by controlling respiratory infection; (2) providing nutritional support (ie, pancreatic enzyme supplements and an adapted and balanced diet) to achieve adequate nutritional status and growth [4]; and (3) complication prevention, detection, and management [5]. To achieve these goals, a multidisciplinary team of specialized and expert health professionals is required [6,7]. A study of user needs related to mHealth for pediatric cystic fibrosis (PCF) identified the set of preferred features mobile apps should support; the potential use of PCF apps and their suitability to fit into PCF clinical management remains unexplored
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