240 Discord between patients' general practitioner repeat prescriptions and the medication list held by a paediatric CF centre

Abstract

About 60% of the people with CF have low or medium adherence to their PEP therapy. Both patients under frequent and occasional medical supervision (50 to 1 visit per trimester) are concerned by a lack of intrinsic motivation. Indeed, Health professionals have limited impact on the key determinants of adherence: high self-esteem, feeling of autonomy, positive mindset, supporting environment, appropriate time management, etc. Health games can provide a window into the “real time” behaviors of patients. Objectives: We develop a community based on non-proprietary technologies to foster collaboration between patient groups, health practitioners, researchers and professionals of other fields. We conceive low-tech devices to collect daily therapy data. We build a game engine to enable children and their relatives to create games based on configurable therapy patterns. Results: Following the prototypes tested at CHU Sainte-Justine (Canada, poster WS05.4 in 2015), we started to develop the game and devices to connect the PEP to computers and smartphones – one using a pressure sensor, one sound analysis. We released our documentation and code under public licence so that everyone can improve and use it (breathinggames.net). We set up a system to log contributions and redistribute the funds we raise. Up to now, 60 people contributed. Next steps are a crowdfunding campaign to mobilize new contributors and a multisites research coordinated by Haute ecole Arc (Switzerland).