An international survey of experiences and attitudes towards pacing using a heart rate monitor for people with myalgic encephalomyelitis/chronic fatigue syndrome

Abstract:

Background: Myalgic encephalomyelitis (ME) is a complex, multi-system neurological condition. The defining feature of ME is post-exertional malaise (PEM) with over 30 symptoms triggered by physical, cognitive, emotional and social activity.

The cause of PEM is unclear but one area of research using cardio-pulmonary exercise tests show a reduced ventilatory anaerobic threshold (VAT) with repeated tests leading to PEM.

Pacing with heart rate monitoring (HRM) provides feedback to maintain activity intensity below the VAT. There is only one piece of research investigating the use of HRM although a number of guidelines recommend it.

Objective: To identify the experiences and attitudes of people with ME towards HRM.

Methods: A 40 question online survey was devised and released on ME websites, Twitter and Facebook pages. People with ME read the information sheet and followed an online link to the survey. The survey was open for three weeks and all answers were anonymous.

Results: 488 people with ME completed the survey. Most participants were female, 35-50 years and with a reported illness of greater than 5 years. Over 100 types of HR monitor used. Over 30 benefits and over 30 negatives identified. HRM reduced severity of ME and severity and duration of PEM.

Conclusion: Although there are limitations, HRM has many benefits including helping PwME to understand and manage their PEM and support them to increase their activities, including work. There is a need for more research and education of healthcare professionals in the safe use of HRM.

Source: Clague-Baker N, Davenport TE, Madi M, Dickinson K, Leslie K, Bull M, Hilliard N. An international survey of experiences and attitudes towards pacing using a heart rate monitor for people with myalgic encephalomyelitis/chronic fatigue syndrome. Work. 2023 Mar 13. doi: 10.3233/WOR-220512. Epub ahead of print. PMID: 36938766. https://content.iospress.com/articles/work/wor220512 (Full text)

Compliance challenges in a longitudinal COVID-19 cohort using wearables for continuous monitoring

Abstract:

Background: Wearables to Investigate the Long Term Cardiovascular and Behavioral Impacts of COVID-19 (WEAICOR) study is a prospective observational study using continuous monitoring to detect and analyze biometrics. Compliance to wearables was a major challenge when conducting the study and was crucial for the results.

Objective: The aim of this study is to evaluate patients’ compliance to wearable wristbands and determinants of compliance in a prospective COVID-19 cohort.

Methods: Biostrap wearable device was used to monitor participants’ biometric data. Compliance was calculated by dividing the total number of days in which transmissions were sent by the total number of days in the study. Univariate correlation was performed between compliance, days in the study and age, BMI, sex, symptom severity, and number of complications/comorbidites as independent variables. Also, multivariate linear regression was then performed with days in the study as a dependent variable to assess the power of different parameters in determining days in the study.

Results: On hundred twenty-two patients were included in the study. Patients were on average 43 years old and 32% were female. Age was found to be correlated with compliance (r=0.23, P=0.01). In addition, age (r=0.30, P=0.001), BMI (r=0.19, P=0.03) and severity of symptoms (r=0.19, P=0.03) were found to be correlated with days spent in the study. On multivariate analysis with days spent in the study as a dependent variable, only increased age was a significant determinant of compliance with wearables (adjusted R2 = 0.1, β = 1.6, P= 0.01).

Conclusions: Compliance is a major obstacle in remote monitoring studies and the reasons for a lack thereof are multifactorial. Patient factors such as age, in addition to environmental factors can affect compliance to wearables.

Source: Mekhael M, Ho C, Noujaim C, Assaf A, Younes H, El Hajjar AH, Chaudhry HA, Lanier B, Chouman N, Makan N, Shan B, Zhang Y, Dagher L, Kreidieh O, Marrouche N, Donnellan E. Compliance challenges in a longitudinal COVID-19 cohort using wearables for continuous monitoring. J Med Internet Res. 2023 Jan 6. doi: 10.2196/43134. Epub ahead of print. PMID: 36763647. https://preprints.jmir.org/preprint/43134/accepted (Full text available as PDF file)