JMIR Publications

ABSTRACT

Background:

Despite a large number of clinical trials aiming at evaluating the usage of digital technology for the self-management of chronic diseases, there is little discussion about the user experience when using this technology. Not surprisingly, evaluations focus on the primary outcomes, i.e., the health outcomes. A good user experience is however a critical factor for retaining patients and health care professionals in using the digital solutions. Understanding the user experience can inform the design of digital solutions towards increased motivation to self-management.

Objective:

Our research relates to the self-management of cystic fibrosis (CF) with focus on the care of young patients. Self-management enfolds the idea that patients in close collaboration with health care professionals gain knowledge about the chronic disease and its treatment, and that they can carry out the necessary steps of the treatment themselves. Therefore, our research targets those directly affected by CF, the parents involved in the treatment and the health care professionals (HCPs). Following a User-Centred Design approach, we have developed digital support for the self-management with focus on gastro-intestinal (GI) concerns. The solution consists of a mobile app for patients and parents, and a professional web tool for HCPs. In order to evaluate this solution, a 6-months clinical trial was conducted in five European countries. This paper analyses the user experience of the patients, parents and HCPs involved in the trial. It addresses two main questions. The first relates to user acceptance: How do the software features and the context of use affect the user experience of the proposed digital self-management approach? The second relates to impact: What are the perceived benefits and downsides of using this digital self-management approach?

Methods:

A mixed methods approach combining qualitative and quantitative data collection was applied to explore the research questions. Data were collected through 42 semi-structured qualitative interviews involving patients, parents and HCPs in six CF competence centres in five European countries. Additionally, data of patients and parents were collected through questionnaires embedded in the self-management app.

Results:

The results show that the enzyme dose calculation and nutrition management features provided by the app are particularly useful. Several benefits were reported, including reduced occurrence of symptoms, increased self-efficacy and enhanced quality of life. Food recording required by the enzyme dose calculation and nutrition management is however sometimes experienced as time consuming and cumbersome. Patients and parents have different skills and the approach requires the follow-up by HCPs, especially in an introductory phase. As the enzyme dose calculation is a novel method introduced by MyCyFAPP, there is still need for improvement. In particular the calculation has to be tailored to personal needs and guidelines for this tailoring have to be developed. From the HCPs perspective, the approach provides more precise information about the patients, thus allowing for more personalized advice. However, patient motivation and quality of recorded data decrease over time as self-efficacy increases, and the tight follow-up of several patients over time leads to an increased work-load of HCPs. We have therefore identified a set of use cases that take into account the factors motivating for app usage and reducing the work-load of HCPs.

Conclusions:

The proposed self-management approach enables patients and parents to rapidly strengthen knowledge about the implementation of the treatment and to increase self-efficacy. There is therefore no need for regular app usage over long time. Rather, identifying for which target groups and in which situations the app is beneficial is more relevant. Digital self-management is a new practice for HCPs. It requires guidelines for implementing new forms of collaboration with patients as well as for the development of new skills for HCPs in order to introduce the digital approach to patients. In particular, there is a need for personalising the follow-up, depending on the patients’ capabilities. Patients develop best practices that have the potential to make the app usage more efficient and effective. These should be collected and shared among patients.