Research: Tracking MS

EpubNeven et al. Documenting outdoor activity and travel behaviour in persons with neurological conditions using travel diaries and GPS tracking technology: a pilot study in multiple sclerosis. Disabil Rehabil. 2013 Jan.

Objective: Persons with multiple sclerosis (PwMS) experience several physical and cognitive problems which can influence their travel behaviour. This study aimed to document the number of activities, the activity type and the transport mode of the related trips that are daily made by PwMS. Their outdoor activity and travel behaviour was studied in relation to disease-related disability. Methods: Thirty six PwMS (Expanded Disability Status Scale, EDSS, 1.5-8.0, age 27-63) and 24 healthy controls (age 25-62) were studied, using activity-related travel diaries and GPS tracking devices. Information about overall disability characteristics was gained by standard clinical tests and questionnaires. PwMS were further divided in three subgroups based on EDSS cut-off scores 4.5 and 6.5. 

Results: Persons with mild ambulatory dysfunction (EDSS 1.5-4.0, n = 17) showed similar travel characteristics to healthy controls, with few restrictions during travelling. Statistically significant changes in activity and travel behaviour were detected in the moderate (EDSS 4.5-6.5, n = 8) and severe MS subgroups (EDSS > 6.5-8.0, n = 11) compared with healthy controls: driving independently became less frequent, significant more trips were made with company and the duration of performed activities had increased. 

Conclusion: The combination of self-reported travel diaries and objective GPS loggers offered detailed information about the actual outdoor travel behaviour of PwMS, which was significantly changed in PwMS with EDSS greater than 4. Implications for Rehabilitation Activity and travel behaviour changes significantly in persons with multiple sclerosis (MS) with moderate to severe disability (EDSS greater than 4). Behavioural therapy could help to develop better coping and problem-solving skills to overcome anxiety in the making of trips by persons with MS with a mild severity. Enhancing community environments could serve as a promising approach to increase the outdoor participation of persons with (more severe) impairments.

When you can monitor the problem, you can think of a solution. Should GPS be part of a trial as an outcome or is it too Big Brother

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  • I don't think it is too big brother if it is being used for a research project and people know what they are agreeing to. I hope any study would take into consideration the fact that access to toilet facilties etc is a major consiferation of PwMS, and therefore has a knock on effect to when/where people are happy to travel to on their own.

    • Agreed, it is not big brother because the MSers consented to the GPS. It's good to see technology incorporated into studies if we can then have more confidence in the results compared to self-reporting by memory-impaired individuals. (I am familiar with memory impairment…)

  • Proposing behavioural therapy to overcome perceived anxiety is a patronising and medical-led response. Unpredictable symptoms such as fatigue has a massive impact on evaluating travel plans – where can you rest for an unknown period of time at any point in your trip ?

    Problem-solving / anxiety lessening techniques may have a minor role to play but frankly to have an enjoyable trip I have to do loads of research online to source accomodation that not only meets my mobility needs and finances but is also located appropriately for points of interest and accessible transport. I also have to investigate whether I can hire mobility equipment, whether I can access the thing I want to see, the local culture in relation to disability in general and MS in particular. And I agree with the comment above about toilet facilities.

    Better information sharing would help – I suggested to trip advisor that they add a disabled traveller attribute type to the existing Families, Couples, Solos and Business. There are a few disabled traveller review / info websites but they are usually out of date (especially given the failure rates of hotels and restaurants) and very patchy.

    My experience of "assistance" through airports is pretty negative, with the processes generally set up for the convenience of the contractor (probably driven by cost containment) not the passenger. My small kids have been asked to make their own way through Heathrow terminals as the only obligation is to provide assistance to me.

    And sometimes it's other people's attitudes that need to improve. On a recent trip to Istanbul, the airline check-in staff referred to me as a wheelchair several times – deeply humiliating…

    • It's very disheartening to read about some of you experiences. It just goes to show how much progress there is yet to achieve in getting society to treat disable people with respect and courtesy, to treat them like a human being.

      Even this blog at times talks about disability in a negative tone. Whilst no one wants to be disabled, we are making the best of a bad situation. Time and again I've read comments from followers of this blog talking about wheelchairs or crutches as a pejorative. That's not good.

  • I've been looking at the new criteria for Personal Independence Payment (PIP) and the whole business of planning, organising and executing journeys is one of the main areas for assessment. Hopefully, when MSers apply for the payment, they'll fully exploit their difficulties.

    • I got turned down for DLA last year (now PIP). The reason was the neurology registrar didn't put my major symptom on the letter to my GP and there are no medical examination notes. There is just a headed piece of paper with possible MS diagnosis and his signature. I had no proof of this symptom.

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