An adaptive pacing intervention for adults living with long COVID : A narrative study of patient experiences of using the ‘PaceMe’ app

Meach, Rachel and Carless, David and Sanal-Hayes, Nilihan E. M. and Mclaughlin, Marie and Hayes, Lawrence and Mair, Jacqueline L. and Ormerod, Jane and Hilliard, Natalie and Ingram, Joanne and Sculthorpe, Nicholas F. (2024) An adaptive pacing intervention for adults living with long COVID : A narrative study of patient experiences of using the ‘PaceMe’ app. Journal of Patient Experience, 2024. ISSN 2374-3735

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Abstract

Adaptive pacing (AP) is a self-management technique which seeks to balance energy and rest in individuals with chronic health conditions. Adaptive pacing can help people with myalgic encephalomyelitis/chronic fatigue syndrome learn how to manage their energy expenditure thereby reducing their risk of post-exertional malaise (PEM) and other symptoms. Given some symptom similarity, AP also has rehabilitation potential for people experiencing disability from long COVID. The purpose of this study was to explore patient experiences of an AP intervention (the “PaceMe” app) to determine its value for individuals experiencing long COVID. Twenty-five participants each took part in two narrative interviews (at intervention start point and at 3-6 months). Data were analyzed using narrative thematic analysis. Our analysis identified 4 themes relating to key benefits of the PaceMe app: (1) PEM management, (2) Support, (3) Validation, and (4) Control and Agency. By illuminating the critical facts and centring patient voices, these findings contribute a better understanding of the experiences and needs of those with long COVID and highlight the value of a digital health intervention as a vital component of rehabilitation.