Multiple sclerosis home monitoring: patients and doctors both win

The board member of the Multiple Sclerosis (MS) Support Society and the director of West Tallinn Central Hospital’s neurology clinic, Doctor Katrin Gross-Paju is a practicing doctor whose clinic has taken part in science and development projects. The newest innovation project is the MS home monitoring system developed from clinical practice, which doctors and patients can both benefit from.

“When our partners, who have been developing sensor systems for years, introduced the idea of home monitoring, I needed time to adjust to the idea. Doctors are being taught to think that people want to see doctors and direct communication is very important. From the time the patient comes through the office door and sits in the chair, I already have an image of their health status – I will observe the patient’s status, walk, etc.”

But the interest of the technology partners motivated Doctor Gross-Paju to experiment with a new possibility. And that is how five years ago a new development project with the aim to develop a patient home monitoring system based on sensors started.

Gross-Paju adds that even her everyday work, which has changed a great deal, has developed the need for home monitoring: “Only a quarter of a century ago multiple sclerosis was an untreatable disease, and patients with it usually had a short life. Now MS is basically the flagship of neurology. There are many medicines and treatment options available that are quite effective.”

Life changed 180 degrees for people with an MS diagnosis. “While 10 to 15 years ago MS patients came to an appointment in a wheelchair, today most patients are, in essence, healthy. They go to work, and they are busy, storming away from the doctor’s appointment to run their errands. Fresh statistics show that 90% of patients are totally healthy for decades. At one point I realized that I see a lot of healthy people who come to the office to report to me for two minutes on how everything is fine. The time cost for the doctor and the patient is immense,” says Doctor Gross-Paju.

At the same time, MS does need constant observation. The home monitoring system allows stable patients to avoid doctor’s appointments.  “If we are able to observe stable patients from home, they will not have to come to a doctor’s appointment from the other side of Estonia. With the home monitoring system, the patients are being observed and I will have an indication about whether their neurological condition stays the same. As a doctor I can focus on those patients whose condition has worsened,“ she adds.

The method may hide in simplicity

When developing the home monitoring solution, the key question was how to adequately assess the patient’s condition from home. “Activities to assess the patient must be very simple yet informative to the doctor. For example, doing simple but repeatable movements. The more complex the movement is, the harder it is to repeat precisely in a way that the system can make a conclusion through the sensors,” the doctor explains.

“Finding a solution was not easy. The literature is filled with complicated figures; for instance, the sensors have been used to assess the patient’s movement patterns when walking or the patients have had to do complicated movements. We also had an idea for how to assess fatigue, but our technology partners gave it a very critical review in terms of measurability. Together with physical therapists, we developed the first series of exercises which fit the requirements – they are repeatable and sensitive, but stable at the same time,” she says.

“From the moment we found the solution which we were happy with, we have continued with tests. For instance, we have observed whether fatigue will affect the test results – in practice it is very important. Results are different – there are people for whom fatigue plays no role, but there are those for whom it does. Our aim is to put together instructions for whether the exercises should be performed after resting or anytime. One sub-project, which is still in its beginning stages, determines the effect of the severity of disability on monitoring,” Gross-Paju explains and adds that today the home monitoring system has been studied on MS patients. In the long-term perspective, there are several possibilities for use. For example, the home monitoring system can be used for rehabilitation.

The home monitoring system does not identify relapses

In relation to the home monitoring system, an important paradox must be acknowledged involving periods of relapses and stability characteristic to the disease (a stable period can last for years).

“Specifically, the home monitoring system cannot discover relapses but only confirms during stable periods that everything is fine, the treatment works, and there is no need for a doctor’s appointment. The doctor can prescribe a digital prescription for another period. The reason is that relapses can start with the worsening of coordination and balance but they also may not. For example, a relapse can begin with decreased vision in one eye, but the movement sensor cannot identify that symptom. Thus, the responsibility to visit a doctor when the disease gets worse is on the person,” says Gross-Paju.

“This paradox raises a question why home monitoring is needed at all.

“The point of the home monitoring system is to give people and the doctors additional reassurance that the situation is stable: treatment should be continued, there is no need for a doctor’s visit. At the same time, the doctor will not renew the prescription only based on the patient’s assessment but on the sensor’s measurements that confirm that assessment.

The system also creates discipline – the patient must do exercises observed by the sensor every week, the doctor sees real numbers and it confirms that the patient is motivated and stable,” she said.

For the question on how home monitoring can help most patients, Doctor Gross-Paju gives an example: “If there are about 1,000 MS patients in Estonia, about 700 get different treatments. Of those, about 450 to 500 are stable, meaning they visit the doctor four times a year, where the doctor confirms that their condition is stable. We cannot require that every patient uses the home solution, but in the patient’s perspective, a lot of money and time can be saved. For example, if 200 patients agree to use the home monitoring system, we manage to prevent 800 appointments.”

Home monitoring changes medicine

The home monitoring development project has been underway for five years now and over 100 patients have participated in it. Currently, the system has been developed to the point that they are searching for ways to test it in one hospital at first and then in several hospitals.

“Patients are asking about the home monitoring system themselves because they have heard positive feedback on it. At the moment it cannot be offered to patients, but the development process is at the end stage and there is commercial interest in the system,” she says.

The development team of the home monitoring system will soon bring this exciting idea to the Estonian Health Insurance Fund. “Sooner or later we will reach the point in Estonia where the Estonian Health Insurance Fund will accept that the home monitoring system is the same as visiting a doctor. Let alone an ideal world where home monitoring will be in the Estonian Health Insurance Fund’s list of health care services,” says Doctor Gross-Paju.