Perceived usefulness of digital self-tracking among people with multiple sclerosis

Abstract

Background and aim Self-care technologies may support patients with multiple sclerosis (MS) in their everyday disease management by enabling self-monitoring of various health indicators, such as symptom levels and physical activity levels. The aim of this study was to assess the usefulness of tracking self-selected MS- and health-related measures via a digital self-tracking tool for people with MS (PwMS) over a period of six weeks. Methods An initial development phase was followed by a six-week testing phase with 58 test participants. The evaluation phase followed a sequential, exploratory mixed-methods design, consisting of 14 interviews with test participants during the testing phase, followed by a survey of all participants after the testing phase to confirm and elaborate on the interview findings. The interview data were analyzed through a five-step thematic analysis, and the survey data were analyzed descriptively. Results The results of the mixed-methods study can be summarized in the following findings: (1) Use of the self-tracking tool assisted users in clarifying patterns regarding their symptoms, physical activity, sleep quality and emotional well-being. (2) Tracking physical activity and, to some extent, sleep had a motivational effect on participants in relation to increasing activity and/or changing habits. (3) Data quality/accuracy constitutes an important criterion for considering the self-tracking tool relevant. (4) The self-tracking tool may support dialogue between patients and healthcare professionals, and/or it may potentially play a role in peer-to-peer support. Conclusion The results of the present study indicate that the self-tracking of symptoms, sleep, physical activity and other measures may contribute positively to everyday self-management among PwMS. Professional support in interpreting and acting upon the data should be considered.