“It’s a moving target”: Pacing to reduce symptom exacerbation-Results from an international community-engaged study with adults living with Long COVID.

Kiera McDuff, Darren A. Brown, Soo Chan Carusone, Angela M. Cheung, Kristine M. Erlandson, Susie Goulding, Margaret O'Hara, Natalie St. Clair-Sullivan, Ruth Stokes, Catherine Thomson, Liam Townsend, Hannah Wei, Patricia Solomon, Kelly K. O'Brien, Mary Kelly, Lisa McCorkell, Sarah O'Connell, Imelda O'Donovan
Purpose:

Our aim was to describe experiences of pacing from the perspectives of adults living with Long COVID from Canada, Ireland, the United Kingdom, and the United States.



Methods:

We conducted a community-engaged qualitative descriptive study involving online semi-structured interviews with adults living with Long COVID in Canada, Ireland, the United Kingdom, and the United States. Team members from the Patient-Led Research Collaborative, Long COVID Physio, Long COVID Support UK, COVID Long Haulers Support Group Canada, and Long COVID Ireland recruited adults who self-identified as living with Long COVID in Canada, Ireland, United Kingdom, and United States.  We purposively recruited for diversity in age, gender identity, ethnicity, sexual orientation, and time since initial COVID-19 infection. We used an interview guide to ask about strategies used to mitigate health challenges living with Long COVID. We used directed content analysis techniques to address research questions.

Results:

Among the 40 participants living with Long COVID, the median age was 39 years, most were women (63%; n=25); and living with Long COVID for >1 year (83%; n=33). Most (93%) participants (n=37) discussed pacing. Pacing was characterized by participants as a helpful living strategy with the aim to mitigate or prevent multidimensional health challenges of Long COVID, although it was not a cure for Long COVID. Pacing was described as a ‘moving target’, a challenging learned skill, requiring time, effort, and trial and error to implement. Ineffective pacing resulted in exacerbations of symptoms. Participants used analogies to describe pacing, including Spoon Theory, staying within an energy envelope, and budgeting energy.

Conclusion(s):

Pacing is a ‘moving target,’ for adults living with Long COVID, characterized as a learned skill that requires time, effort, trial and error to implement effectively. 


Implications:

Pacing is a key component of safe rehabilitation for persons living with Long COVID experiencing PESE. Physiotherapists should consider the complexity of pacing, and work collaboratively with adults living with Long COVID to implement this strategy, when appropriate.

Funding acknowledgements:
Canadian Institutes of Health Research (CIHR), (FRN:GA4-177753); Rehabilitation Science Research Network for COVID, Temerty Faculty of Medicine, University of Toronto.
Keywords:
Long COVID
COVID-19
rehabilitation
Primary topic:
Disability and rehabilitation
Second topic:
Other
Did this work require ethics approval?:
Yes
Name the institution and ethics committee that approved your work:
This study was approved by the University of Toronto Health Sciences Research Ethics Board (Protocol #41749).
Provide the ethics approval number:
REB Protocol #41749
Has any of this material been/due to be published or presented at another national or international conference prior to the World Physiotherapy Congress 2025?:
Yes

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