JMIR Publications

ABSTRACT

Background:

Despite a large number of clinical trials aiming at evaluating the digital self-management of chronic diseases, there is little discussion about users’ experiences with the digital approaches. A good user experience is however a critical factor for technology adoption. Understanding users’ experiences can inform the design of approaches towards increased motivation to digital self-management.

Objective:

Our research relates to the self-management of cystic fibrosis with focus on gastro-intestinal concerns and the care of young patients. Following a User-Centred Design approach, we developed a self-management app for patients and parents, and a web tool for health care professionals. To evaluate the proposed solutions, a 6-months clinical trial was conducted in six European cystic fibrosis competence centres. This paper analyses the user acceptance of the technology, and the benefits and downsides perceived by the trial participants.

Methods:

A mixed methods approach was applied. Data were collected through 41 semi-structured qualitative interviews of patients, parents and health care professionals involved in the clinical trial. Additionally, data were collected through questionnaires embedded in the self-management app.

Results:

Support for enzyme dose calculation and nutrition management was found particularly useful. Patients and parents rapidly strengthened knowledge about the treatment and increased increase self-efficacy. Reported benefits include reduced occurrence of symptoms and enhanced quality of life. Patients and parents had different skills, requiring follow-up by health care professionals in an introductory phase. Health care professionals valued getting precise information about the patients, allowing for more personalized advice. However, the tight follow-up of several patients led to an increased workload. Over time, as patient self-efficacy increased, patient motivation for using the app decreased and the quality of the reported data was reduced.

Conclusions:

Self-management enfolds a collaboration between patients and health care professionals. To be successful, a self-management approach should be accepted by both parties. Through understanding behaviours and experiences, our study defines recommendations for a complex case, the demanding treatment of cystic fibrosis. We identify target patient groups and situations for which the app is most beneficial and suggest focusing on these rather than motivating for regular app usage over long time. We also advise a personalized supervision of patients during the introduction of the approach. Finally, we propose to develop guidance of health care professionals for facilitating the change of practice. As personalisation and technology literacy are factors found to influence the acceptance of digital self-management of other chronic diseases, it is relevant to consider the proposed recommendations beyond the case of cystic fibrosis. Clinical Trial: Trial registry: ClinicalTrials.gov Registration number: NCT03292718 Trial name: Clinical Trial to Assess Influence of MyCyFAPP Use on GI Related QOL in Children With Cystic Fibrosis (MyCyFAPP) URL: https://clinicaltrials.gov/ct2/show/NCT03292718