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MS research update – Could you track MS over time using a smartphone? – 2 November 2015

Summary

This study was an initial test of using a smartphone system to see if it was possible to use this to track MS over the course of a year and if there were any issues with using it.

38 pairs of participants took part in the study. Each pair consisted of a person with MS and someone they lived with (cohabitant). Every day for a year (365 days) participants were prompted to complete an electronic version of one of the standard tests used in MS assessment, which was randomly selected by the system.

22 people with MS and 17 cohabitants complete a year of daily tests. The study found that using a smartphone to track symptoms and performance over time seems to be a feasible way to monitor MS in a more natural setting, rather than single tests done at the clinic. However as people with visual or cognitive problems were more likely to leave the study the smartphone interface could be improved for future studies to make it more accessible to these participants. Such smartphone systems could help us learn more about MS and the course that it takes over time, but it would need to complement other tests and assessments too.

Background

MS is a variable condition and so when a person with MS sees their health professionals for a check-up or review, the health professional is only seeing how they are on that particular day. Any tests or assessments that are done are usually short and they are done in a clinic setting, so they do not cover all of the situations the person would encounter through their day to day life. Symptoms can also change through the year and keeping track of what happened and when can be difficult to recall or explain in what could be a short appointment.

Using technology could help the person with MS as well as their health professionals obtain a better picture of their MS and how that changes over time and if there is anything in particular that is having an effect. Smartphone based assessments have been trialled in several other neurological conditions such as Parkinson’s disease and stroke to track symptoms and symptom management. This study was an initial test of using a smartphone system to see if it was possible to use this to track MS over the course of a year and if there were any issues with using it.

How this study was carried out

38 pairs of participants took part in the study. Each pair consisted of a person with MS and someone they lived with (cohabitant), to act as a control for their environment to compare them to. Each participant was given an Android smartphone that was loaded with a custom set of applications. These were designed to assess how well participant’s performed in tests of colour vision, attention, dexterity and cognition and also collect information on symptoms such as fatigue and mood. The tests included were electronic versions of standard tests used in MS assessment such as the 9-hole peg test, the modified fatigue impact scale and the bladder control scale.

Every day for a year (365 days) participants were prompted to complete a test that was randomly selected by the system. They did not have to complete every test every day.

Information collected about symptoms was also compared to environmental data, such as time of day, outside temperature and the number of daylight hours.

What was found

22 people with MS and 17 cohabitants complete a year of daily tests. Of the people that dropped out of the study most did so when they stopped responding to the prompts to complete the daily tests. The longer the study went on, the more likely people were to stick with completing the tests, as most people dropped out in the first few months. People with MS who had visual or cognitive problems were more likely to drop out of the study.

Symptoms were found to fluctuate. When the researchers looked at fatigue more closely they found that for some, but not all, of the participants with MS fatigue was worse when there were more hours of daylight in the summer.

As participants were completing tests outside of a controlled clinic setting there is the possibility that they were distracted by external factors such as noise. So the researchers looked at scores of the tests over time. They found with six months of data they could establish a good estimate of each participant’s performance.

What does it mean?

The study shows that using a smartphone to track symptoms and performance over time seems to be a feasible way to monitor MS in a more natural setting, rather than single tests done at the clinic. The researchers found that as people with visual or cognitive problems were more likely to leave the study the smartphone interface could be improved for future studies to make it more accessible to these participants.

The researchers conclude such smartphone systems could help us learn more about MS and the course that it takes over time. However, they do stress that a smartphone system alone could not tell us everything, tests performed in a clinic, as well as wearable devices (such as the walking assessment device covered in a previous research update) would all be complementary to each other to build up a more detailed picture of MS. As this was only a pilot study, further research would be needed to see if such systems could collect useful information.

Bove R, White CC, Giovannoni G et al.
Evaluating more naturalistic outcome measures: a 1-year smartphone study in multiple sclerosis.
Neurol Neuroimmunol Neuroinflamm. 2015 Oct 15;2(6):e162. eCollection 2015.
abstract
Read the full text of this paper

More about keeping track of your MS

You might only see your nurse or neurologist once or twice a year. Keeping track of what has happened since your last appointment can be difficult to recall or explain, and you might only have a short appointment in which to cover a lot of information. You might also want to learn more about your own MS and if it changes in response to different factors, such as activity levels, stress or diet or at different times of the year.

You could keep a diary containing doses of treatments, symptoms experienced and their impact, activities undertaken that seem connected to symptoms, appointments and questions to ask. Alternatively you could keep a more informal series of notes in a notebook with a brief description of anything you particularly want to remember, such as experiencing a new symptom, or something that made a symptom worse or better.

There are also phone apps available that can help you to monitor symptoms and enable you to share this information with your MS team. A number of different ones are available with features including interactive symptom trackers, logs for factors which could make symptoms worse such as weather, the ability to record medication and set reminders for taking them. The SymTrac app is one example and it is specific for MS. Other more generic apps are also available which help you track any health condition.

You can read more about keeping a symptom diary in the A to Z of MS. Or you can read, download or order a printed copy of the book MS and Me: a self-management guide to living with MS. This book helps you learn more about your own MS and find the most effective ways to manage it.

Research by topic areas...

Assessment tools

Jongen PJ, Blok BF, Heesakkers JP, et al.
Simplified scoring of the actionable 8-item screening questionnaire for neurogenic bladder overactivity in multiple sclerosis: a comparative analysis of test performance at different cut-off points.
BMC Urol. 2015 Oct 24;15(1):106.
abstract
Read the full text of this paper

Disease modifying drugs

Willis MD, Harding KE, Pickersgill TP, et al.
Alemtuzumab for multiple sclerosis: long term follow-up in a multi-centre cohort.
Mult Scler. 2015 Oct 29. [Epub ahead of print]
abstract

Other treatments

Clearfield JS, Nelson ME, McGuire J, et al.
Intrathecal baclofen dosing regimens: a retrospective chart review.
Neuromodulation. 2015 Oct 30. [Epub ahead of print]
abstract

Venugopalan L, Taylor PN, Cobb JE, et al.
Upper limb functional electrical stimulation devices and their man-machine interfaces.
J Med Eng Technol. 2015 Oct 28:1-9. [Epub ahead of print]
abstract

Engeler DS, Meyer D, Abt D, et al.
Sacral neuromodulation for the treatment of neurogenic lower urinary tract dysfunction caused by multiple sclerosis: a single-centre prospective series.
BMC Urol. 2015 Oct 23;15(1):105.
abstract
Read the full text of this paper

Pathophysiology

Galego O, Gouveia A, Batista S, et al.
Brain atrophy and physical disability in primary progressive multiple sclerosis: a volumetric study.
Neuroradiol J. 2015 Jun;28(3):354-8.
abstract
Read the full text of this paper

Psychological aspects

Marrie RA, Fisk JD, Tremlett H, et al.
Differences in the burden of psychiatric comorbidity in MS vs the general population.
Neurology. 2015 Oct 30. [Epub ahead of print]
abstract
Read the full text of this paper

Sriramoju B, Kanwar RK, Kanwar JR.
Neurobehavioral burden of multiple sclerosis with nanotheranostics.
Neuropsychiatr Dis Treat. 2015;11:2675-89.
abstract
Read the full text of this paper

Lopes Costa S, Gonçalves OF, DeLuca J, et al.
The temporal dynamics of visual processing in multiple sclerosis.
Appl Neuropsychol Adult. 2015 Oct 27:1-8. [Epub ahead of print]
abstract

Vitamin D

Mowry EM, Pelletier D, Gao Z, et al.
Vitamin D in clinically isolated syndrome: evidence for possible neuroprotection.
Eur J Neurol. 2015 Oct 31. [Epub ahead of print]
abstract

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