Users’ Experiences of a Mobile Health Self-Management Approach for the Treatment of Cystic Fibrosis: Mixed Methods Study

Abstract

<jats:sec> <jats:title>Background</jats:title> <jats:p>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 digital approaches. However, a good user experience is a critical factor for technology adoption. Understanding users’ experiences can inform the design of approaches toward increased motivation for digital self-management.</jats:p> </jats:sec> <jats:sec> <jats:title>Objective</jats:title> <jats:p>This study aimed to evaluate the self-management of cystic fibrosis (CF) with a focus on gastrointestinal concerns and the care of young patients. Following a user-centered design approach, we developed a self-management app for patients and parents and a web tool for health care professionals (HCPs). To evaluate the proposed solutions, a 6-month clinical trial was conducted in 6 European CF competence centers. This paper analyzes the user acceptance of the technology and the benefits and disadvantages perceived by the trial participants.</jats:p> </jats:sec> <jats:sec> <jats:title>Methods</jats:title> <jats:p>A mixed methods approach was applied. Data were collected through 41 semistructured qualitative interviews of patients, parents, and HCPs involved in the clinical trial. In addition, data were collected through questionnaires embedded in the self-management app.</jats:p> </jats:sec> <jats:sec> <jats:title>Results</jats:title> <jats:p>Support for enzyme dose calculation and nutrition management was found to be particularly useful. Patients and parents rapidly strengthened their knowledge about the treatment and increased their self-efficacy. Reported benefits include reduced occurrence of symptoms and enhanced quality of life. Patients and parents had different skills, requiring follow-up by HCPs in an introductory phase. HCPs valued obtaining 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.</jats:p> </jats:sec> <jats:sec> <jats:title>Conclusions</jats:title> <jats:p>Self-management enfolds a collaboration between patients and HCPs. To be successful, a self-management approach should be accepted by both parties. Through understanding behaviors and experiences, this study defines recommendations for a complex case—the demanding treatment of CF. 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 a long time. We also advise the personalized supervision of patients during the introduction of the approach. Finally, we propose to develop guidance for HCPs to facilitate changes in practice. As personalization 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 CF.</jats:p> </jats:sec>

Use of a mobile application for self-management of pancreatic enzyme replacement therapy is associated with improved gastro-intestinal related quality of life in children with Cystic Fibrosis

“…But, this 46% app use doesn't take into account the learning effect of using the app: patients remembered the PERT doses needed for frequently consumed meals and consequently used the app for new/unknown meals by the end of the study. Positive results in terms of QOL are in accordance with the user experience as assessed by means of interviews with patients and parents [25] : most parents and patients were keen to use the app in the future.…”

“…Another limitation is the inability to determine which specific part of the app was crucial for improvement of GI QOL (PERT prediction, educational content, PWT, symptoms registration module,…). Most patients/parents did state that the enzyme calculation module and nutrition follow-up had been the most useful features [25] . The burden of using the app was limited, as no patient discontinued for that reason and a considerable number of patients wanted to continue using the app after ending the trial.…”

Mobile Application for Promoting Gluten-Free Diet Self-Management in Adolescents with Celiac Disease: Proof-of-Concept Study

“…Learning, practicing, and acquiring these skills is particularly important in the crucial developmental–transitional period of adolescence [ 3 ]. In recent years, mHealth has been found to be useful in promoting chronic health management [ 25 ]. This proof-of-concept study demonstrated that the content, features, and functions of the Plan My C-Day mobile application operated well, and the simulations were easy to understand and complete.…”

“…In recent years, the number of mobile applications related to health and disease management among adolescents has increased. These include applications for adolescents with chronic conditions, such as diabetes, inflammatory bowel disease, and cystic fibrosis [ 24 , 25 ]. Mobile health (mHealth) is a way to promote health by applying mobile technologies to improve health outcomes.…”

“…They are cost-effective, convenient, easily accessible, personalizable, and can be operated without professional health care assistance [ 26 , 27 ]. mHealth-based approaches have become very popular in chronic health care management and include, among other things, automated text reminders, frequent and accurate symptom monitoring, daily reminders for medication use, follow-up of food intake, education, tips, support, and condition tracking [ 25 , 28 , 29 ]. As such, technological interventions have the potential to contribute to managing gastrointestinal health conditions such as CD [ 30 ].…”