Rethinking Activity: Development And Implementation Of A Virtual Self-management Program For People Living With Long COVID-19

Abstract

PURPOSE: A subset of people who contract COVID-19 will continue to experience symptoms for months after the infection, a phenomenon known as long COVID. Long COVID is an episodic health condition with symptoms (such as dyspnea, fatigue, and post-exertional symptom exacerbation) that last for at least two months that cannot be explained by an alternative diagnosis. The likely volume of current and future long COVID patients in Canada is so high that primary care may not be able to cope given current resources. Many patients are struggling, and more support for self-management of symptoms and activities is required. METHODS: Individuals living with long COVID were recruited using clinical and patient-oriented networks. The BREATHE program is a free, virtual, multidisciplinary, patient-centred, group-based self-management program for long COVID that provides education on Breathing, Rest/recovery, Education, Activity management, Thinking/cognition, Healthy voice strategies, and Eating/nutrition. Group sessions include breakout room discussions on activity pacing and reframing exercise. Content is based on clinical experience, evidence from other conditions and the recommendations for safe rehabilitation in people living with long COVID. Three cohorts of adults living with long COVID took part in March, May and August 2021. Data on recruitment and attendance were collected, and anonymous patient feedback was collected for the purpose of quality improvement. RESULTS: Across the three cohorts, group sizes were n = 8 (an initial pilot), n = 16, and n = 16, and overall attendance was 90%, 91%, and 86%, respectively. There were 3 withdrawals, and feedback was received from 28 individuals. The program was significantly modified in response to patient priorities and preferences, and therapeutic relationships and peer support were emphasized. BREATHE is now an eight-week program involving two sessions per week. Feedback has been increasingly positive, and 100% of respondents from the most recent cohort found BREATHE helpful and would recommend it to other people with long COVID. CONCLUSIONS: The BREATHE self-management program is a feasible, potentially beneficial and cost-effective supportive care strategy for people living with long COVID that could be adopted within the healthcare system.