Experiences Among Patients With Cystic Fibrosis in the MucoExocet Study of Using Connected Devices for the Management of Pulmonary Exacerbations: Grounded Theory Qualitative Research (Preprint)

Abstract

BACKGROUND Early detection of pulmonary exacerbations (PEx) in patients with cystic fibrosis (CF) is important to quickly trigger treatment and reduce respiratory damage. An intervention was designed in the frame of the MucoExocet research study providing CF patients with connected devices and educating them to detect and react to their early signs of PEx. OBJECTIVE Identify the contributions and conditions of home monitoring in relation with their care teams, from the users’ point of view, to detect early and treat PEx. This article focuses on the patients’ experience as first and main users of home monitoring. METHODS A qualitative study has been conducted as part of the overall research project to explore patients’ and professionals’ experience of the intervention. We interviewed the patients who completed the 2-year study using semi-structured guides and conducted focus groups with the care teams. All interviews were recorded and transcribed verbatim. Their educational material was collected. A grounded analysis was done by two researchers. RESULTS Eighteen patients completed the study. Three main categories emerged from the patients’ verbatims and were also found in the professionals’: (1) task technology fit (TTF) reflecting reliability, ease of use, accuracy of data, and support of the technology; (2) patient empowerment through technology, grouping patients’ learnings, validation of their perception of exacerbation, assessment of treatment efficacy, awareness of healthy behaviours, ability to react to PEx signs in relation with their care team; (3) usage reflecting a continuous or intermittent utilisation, the perceived usefulness balanced with cumbersome measurements, routinisation, and personalisation of the measurement process, and the way data have been shared with the care team. Furthermore, three relations have been highlighted between the categories that reflect necessary conditions for patient empowerment through the use of technology. CONCLUSIONS We discuss a theorisation of the process of patient empowerment through the use of connected devices and call for further research to verify or amend it in other contexts of technology, illnesses, and care organisations.