Self-monitoring based management of Multiple Sclerosis

Self-monitoring, the self-reporting of health data through technologies such as smartphones and portable sensors, is seen as a promising tool to support people with chronic conditions in disease management.

In our proposal, we go a step further by providing person-oriented lifestyle information based on self-monitoring data, consisting of a combination of disease insights and lifestyle advice. We do this in people with multiple sclerosis (MS), a chronic neurological disorder with a high personal, economic and social impact. MS manifests itself differently in each person. The symptoms are very variable and the course of the disease is difficult to predict. This unpredictability has a negative impact on the quality of life of patients.

In our research, we want to give people with MS more control over their disease by providing personalised information via a smartphone application (MijnKwik App). This app gives them more insight into their illness and supports them in adjusting their lifestyle. We expect this to increase quality of life and self-reliance. The personalized information is based on lifestyle data that users themselves monitor using the MijnKwik App and the Fitbit: a watch that tracks sleep and physical activity, among other things. Our research is unique because for the first time with MS smartphone algorithms are used to provide personalized information based on self-monitored lifestyle data.

Algorithms
Our research consists of four steps. The first step is to develop algorithms to provide personalised information to people with MS. These algorithms will be developed on the basis of clinical data and lifestyle data from previous studies in which people with MS have used self-monitoring. The content and presentation of personalised information in the MijnKwik app will then be developed in collaboration with MS healthcare professionals and people with MS.

This is followed by a study (lasting six months) at the VUmc in which people with MS are randomly divided into two groups: with and without intervention. The intervention consists of using the MijnKwik App and Fitbit to monitor lifestyle data and provide personalised information via the MijnKwik App.

The effectiveness and efficiency of the intervention is evaluated in different ways. Patient questionnaires are conducted to investigate the impact of the intervention on patient welfare and health care.

In addition, as little is known about how patients and healthcare professionals use self-monitoring in their daily practice, we will conduct interviews with healthcare professionals and MS patients to understand how patient-doctor relationships change and how self-monitoring affects patients' autonomy and disease experience. We will observe medical consultations to investigate the added value of self-monitoring in clinical practice.

However, for an effective clinical implementation of self-monitoring, it is also important that the broader context of care is supportive. Through stakeholder consultations (including with the MS Patient Association, the National MS Fund, healthcare professionals, policymakers and health insurers), we will identify barriers and drivers to implementation and organise focus groups to jointly develop solutions.

More information
Titel project: Self-monitoring based management of Multiple Sclerosis

Programma: Commit2Data-Program

Organisatie: NWO

Projectmiddelen: 500.000

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