Is it time to start monitoring your own disease remotely? #CrowdSpeak #MSBlog #MSResearch
“MSers rate walking, or mobility, as being very important to them. The following figure from Chris Heesen’s 2008 study shows this regardless of disease duration. Do you agree with this?”
“The study below is of interest to me for several reasons. Firstly, it demonstrates that you can assess MSers via telemedicine. In other words you don’t have to physically attend clinic to be assessed. In addition, the average daily walking activity (aDWA) correlated very strongly with the EDSS (r = -0.86). Interestingly, a cut-off point of 3280 steps/day discriminated MSers with ambulatory impairment from those without impairment. This figure is way below the WHO recommendation of 10,000 steps per day. This data confirms data from a study we did, but have not published, from a few years ago and is consistent with other data in the literature. Simply monitoring daily activity is a good surrogate of disability. Which platform to use? I have used the Jawbone Up and FitBit devices and the Moves smartphone App for over a year to assess how easy it is to use these kinds of devices/apps to assess mobility. I found the physical devices irritating and they both broke; the Jawbone Up after a few months and the FitBit after a year. The devices were also very inaccurate when assessing distance; both are not GPS linked. In comparison the Moves App is much better; it simply runs in the background on your smartphone and is much more accurate at assessing distance. The only problem is that it depends on you carrying your smartphone around with you. I am not sure the latter is an issue as most of us carry our smartphones with us when we go out. I would be interested to know how many of you would be prepared to participate in a so called n=1 CrowdStudy to assess the Moves App vs. a small panel of patient-related outcome measures (PROMs) to assess mobility? The idea will be for you to collect your own data and to analyse it yourself to see how good the App is at capturing your mobility, or lack of mobility, relevant to published questionnaires.”
Epub: Sola-Valls et al. Walking function in clinical monitoring of multiple sclerosis by telemedicine. J Neurol. 2015 May 10.
Background: Walking limitation is a key component of disability in MSers, but the information on daily walking activity and disability over time is limited.
Objectives: To determine, (1) the agreement between the standard measurements of MS-related disability [expanded disability status scale (EDSS), functional systems (FS) and ambulation index (AI)] obtained by conventional and remote evaluation using a multimedia platform; (2) the usefulness of monitoring 6-min walk test (6MWT) and average daily walking activity (aDWA) to better characterize MSers disability.
Methods: Twenty-five MSers (EDSS score 1.0-6.5) were evaluated every 3 months for the first year, and aDWA repeated at year 2. Remote visits included the recording of a video with self-performed neurological examination and specific multimedia questionnaires. aDWA was measured by a triaxial accelerometer.
Results: All but two MSers completed the study. Modest agreement between conventional and multimedia EDSS was found for EDSS ≤ 4.0 (kappa = 0.2) and good for EDSS ≥ 4.5 (kappa = 0.6). For the overall sample, pyramidal, cerebellar and brainstem FS showed the greatest agreement (kappa = 0.7). SR-AI showed a modest agreement for EDSS ≤ 4.0 and good for EDSS ≥ 4.5 (kappa = 0.3 and 0.6, respectively). There was a strong correlation between conventional and 6MWT measured by accelerometer (r = 0.76). The aDWA correlated strongly with the EDSS (r = -0.86) and a cut-off point of 3279.3 steps/day discriminated patients with ambulatory impairment. There was a significant decline in aDWA over 2 years in MSers with ambulatory impairment that were not observed by standard measurements of disability.
Conclusion: MS clinical monitoring by telemedicine is feasible, but the observed lower agreement in less disabled patients emphasizes the need to optimize the assessment methodology. Accelerometers capture changes that may indicate deterioration over time.
I have a fitness band / on-the wrist interface-to-my phone that counts steps. I have found that because I know my step count I try to meet a target. Though it has the sensors "changes that may indicate deterioration over time" are not really monitored. I guess walking speed would be the closest but but I have to switch that on for each walk.
My feeling about this is that it is fiddling whilst Rome burns. Navel-gazing. I am not interested in monitoring my disability, only in ways to live with it, whether that be through mobility aids, gadgets or exercises. And ultimately in a therapy for PPMS.
Yes, Rome is burning, but the fire starts off as a smoulder. By the time you know there is a fire it is too late the city is destroyed. What we need are sensitive measures to detect and monitor the smoulder so we can start or escalate treatments early or use the outcomes in trials to test neuroprotective therapies. Without sensitive outcome measures for progressive MS we are simply rowing against the tide.
Yes, when it comes to assessing how effective neuroprotective therapies are, this does indeed make sense. Although in my case, progression of disability was extremely slow for the first 10 years or so at least. It's hard to think of how this could possibly have been meaningfully measured, particularly given the vagaries of general physical condition according to ambient temperature, fitness level, diet, allergy issues, time of the month, stress levels… And I fear that mobility levels are a very crude measure of the damage that is going on.
I'm currently participating in a project assessing the benfits of measuring your sleep, exercise, mood, fatigue… we are using misfit shine and a specially developed app to do this. I really think it can lead to better understanding of how my MS works and howI can manage it better.