Preprint Wearable Technology in the Management of Complex Chronic Illness: Preliminary Survey Results on Self-Reported Outcomes, 2024, Sawyer

Discussion in 'ME/CFS research' started by Dolphin, Dec 7, 2024.

  1. Dolphin

    Dolphin Senior Member (Voting Rights)

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    https://www.researchsquare.com/article/rs-5389182/v1

    Wearable Technology in the Management of Complex Chronic Illness: Preliminary Survey Results on Self-Reported Outcomes


    Abstract

    Chronic illnesses like Long Covid and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome involve fluctuating symptoms, often worsened by exertion. Home monitoring technologies may support symptom tracking and self-management. A survey of 1,301 users of the Visible mobile application found that 77% experienced symptom improvements, 85% felt more in control, and 94% gained better understanding of their energy budget. Home-monitoring-based mobile applications may offer value in managing energy-limiting chronic conditions to achieve better self-management.

    Background

    Complex chronic illnesses like Long Covid (LC) and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) are marked by fluctuating symptoms, often exacerbated by physical, cognitive, or emotional exertion in a phenomenon known as post-exertional malaise (PEM). Home monitoring technologies offer potential benefits by enabling individuals to track symptoms and biometrics, aiding in disease self-management. However, the general effectiveness of such tools is still unknown.

    Methods

    A random sample of users of the Visible mobile application, aged 18 or older and with self-identified complex chronic illnesses such as LC or ME/CFS, were invited to complete an online survey regarding the impact of the app on their chronic disease self-management. Descriptive statistics related to the responses were analyzed and reported.

    Results

    The survey was distributed to 2,636 people, with 1,301 participants responding (49.3% response rate). The average age was 46 years, and 82% of respondents were female. Most participants reported having ME/CFS (42%), LC (31%), or both (18%). Of those with at least 30 days of data, 77% saw improvements in symptoms, 85% felt more in control of their illness, and 94% reported a better understanding of their energy budget.

    Discussion and Conclusion

    Home-monitoring based mobile applications may have utility in helping people with energy-limiting complex chronic illnesses to achieve better chronic disease self-management, and should be considered as a management strategy for people living with these conditions.

     
    Last edited by a moderator: Dec 14, 2024
    Sasha, Trish, Sean and 5 others like this.
  2. Trish

    Trish Moderator Staff Member

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    I find it strange that the abstract doesn't state what biometrics are monitored. I assume this is the Visible data, which as I understand it just monitors heart rate and heart rate variability, with patients subjectively recording their symptoms and activities. There is no objective monitoring of steps, time upright or other physical measures, which seems to me to greatly limit its value both for patients pacing and for scientific study.

    And now I realise I should read the article before jumping to conclusions, but I'll leave my comment as I think it makes the point of how uninformative the abstract is.
     
    Sasha likes this.

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