Abstract
Long COVID—persistent health complications after recovery from coronavirus disease 2019 infection—is associated with activity limitations in nearly 48 million U.S. adults, affecting work, leisure, family, and community functioning. Occupational therapists are experts in customizing interventions to maximize performance of daily routines, and often treat individuals who experience similar functional impacts to those observed in long COVID. The large number of people experiencing new disability, as well as a lack of medical treatment options, make occupational therapy a crucial component of long-COVID research and multidisciplinary management. In this column, we discuss actionable steps occupational therapists can take to place them at the forefront of maximizing functional and quality-of-life outcomes for people with long COVID.
In this The Issue Is column the authors discuss actionable steps occupational therapists can take to place them at the forefront of maximizing functional and quality-of-life outcomes for people living with long COVID.
Long COVID—the presence of persistent health complications after recovery from coronavirus disease 2019 (COVID-19) infection—is a new and poorly understood cause of disability (Thaweethai et al., 2023). As of May 27, 2024, approximately 18% of U.S. adults had experienced long COVID, and about 5%—nearly 13 million people—experienced activity limitations because of their symptoms (National Center for Health Statistics, 2024). Long COVID affects multiple organ systems, with unique clinical phenotypes (Reese et al., 2023; Zhang et al., 2023) affecting endocrine, neurological, cardiopulmonary, musculoskeletal, sleep, gastrointestinal, and mental health functions (Crook et al., 2021). Fatigue and cognitive symptoms in particular are associated with increased disability (Jason & Dorri, 2023), often forcing people to abandon complex routines and roles in their work, family, and community lives (Vanichkachorn et al., 2021). The economic impact of long COVID in the United States is considerable: Up to 4 million people are unable to work because of their symptoms, resulting in a projected $170 billion in lost wages annually (Bach, 2022). The number of people with new disability from long COVID prompts an urgent need for occupational therapy research and evidence-based interventions.
Definition of Long COVID
A consensus clinical definition of long COVID has not yet been established. A World Health Organization (WHO) working group has proposed a list of defining criteria, one of which is that daily functioning must be affected (Soriano et al., 2022). Electronic medical record (EMR)–based studies that have attempted to define long COVID have not yet settled on a unique and comprehensive diagnostic characterization (Thaweethai et al., 2023); however, most of these studies did not include indicators of functional status. A single causal pathway for long COVID has also not yet been established; however, there is consistent evidence of direct and indirect damage to neural tissue, showing similarities to brain injury, neurodegenerative diseases, and tauopathies (Di Primio et al., 2023; Shabani et al., 2023). Biological signatures consistent with myalgic encephalomyelitis/chronic fatigue syndrome have also been noted (Davis et al., 2023).
Risk Factors
Long COVID affects people of any age and initial COVID-19 severity (Crook et al., 2021). It is most prevalent in females (Jacobs et al., 2023) and middle-aged people (Hill et al., 2022). Black and Hispanic people are at greater risk of death from the initial infection (Mackey et al., 2021) and for development of long COVID among survivors (Khullar et al., 2023). Risk appears higher in people with comorbid conditions such as cancer, cardiovascular or pulmonary disease, obesity, mood disorders, and obstructive sleep apnea. Socioeconomic factors that compromise access to health care have also been associated with higher rates of long COVID (Banić et al., 2022; Hill et al., 2022; Mackey et al., 2021; Mandel et al., 2023). Evidence on whether long COVID risk varies by initial COVID-19 severity or interventions delivered during acute infection is still evolving (Malcolm, 2021; Teixido et al., 2023). Occupational therapy practitioners should consider the potential for functional impairments associated with long COVID to interact with chronic health conditions and social factors, affecting the performance of daily routines.
Role of Occupational Therapy
Occupational therapy is the front-line rehabilitation discipline for addressing impaired performance of complex daily routines (American Occupational Therapy Association [AOTA], 2020) and has been recommended as part of the multidisciplinary treatment of long COVID (Venkatesan, 2021; Watters et al., 2021). Occupational therapy addresses disability by using people’s existing routines for both performance-based assessment and individually tailored interventions (AOTA, 2020). To help their clients thrive, occupational therapy practitioners provide a unique plan of care for each person to optimize the fit between their abilities, their environment, and the things they need to do (i.e., occupations; Law et al., 1996).
Physicians and policymakers would benefit from occupational therapy’s involvement in the development of clinical and policy guidelines. Because the mechanisms of long COVID are not yet fully understood, pharmaceutical treatments have not been developed. In the absence of pharmacological treatment, the management of long COVID requires a multidisciplinary approach that is tailored to each client’s symptoms and needs (Ceban et al., 2022). In addition, the inclusion of functional impact in the WHO’s diagnostic criteria places occupational therapy’s scope of practice in the working definition. However, the specific role of function in the definition is not well characterized given that functional indicators are currently underrepresented in the EMR-based research that is seeking to define long COVID (Soriano et al., 2022). Thus, occupational therapy makes an important contribution to research and care teams designed to rehabilitate people with post-COVID functional deficits.
Evidence Supporting Occupational Therapy Interventions for Disabilities Due to Long COVID
Research on occupational therapy for long COVID–related functional impairments is currently inadequate to guide treatment, despite evidence supporting multidisciplinary rehabilitation (Negrini et al., 2021; Vanichkachorn et al., 2021). An early-pandemic editorial in this journal correctly anticipated occupational therapy’s role in helping clients who are recovering from severe infections (Malcolm, 2021). Case reports have described clients with postacute functional impairment (Hellmuth et al., 2021; Mannion & Sullivan, 2021; Wilcox & Frank, 2021), but studies of this design cannot establish the discipline’s scope, intervention effectiveness, or safety. A July 2024 search of studies registered on https://www.clinicaltrials.gov revealed only three clinical trials involving occupational therapy. One trial includes occupational therapy in an intervention arm; however, the study’s endpoint is the total treatment effect of combined respiratory, occupational, physical, speech-language, and dietary therapies, thus occupational therapy’s specific contributions to functional outcomes cannot be isolated. More evidence is needed to describe the disorder’s functional impairments, prognosis, and response to occupational therapy interventions.
Given its effectiveness with other viruses (e.g., severe acute respiratory syndrome, Middle East respiratory syndrome; Vanichkachorn et al., 2021) and diseases with similar characteristics, occupational therapy’s benefit for people with long COVID is plausible. Interventions for mild stroke (McEwen et al., 2015) and brain injury (Radomski et al., 2016) may be effective for cognitive and other neurologic long COVID symptoms, based on these disorders’ mechanistic and functional similarities to long COVID. Energy conservation, used by occupational therapists in many diagnostic populations, may also be appropriate (Vij, 2021). An important caveat is that untested interventions for people with long COVID must be closely monitored because physical and cognitive effort may trigger relapse (Davis et al., 2021). Because evidence has suggested the relative sparing of some cognitive skills that are vital to learning (e.g., insight, long-term memory, cognitive strategy use), people with long COVID are likely to benefit from occupational therapy interventions that build generalizable strategies (Giles, 2018).
Barriers to and Opportunities for Occupational Therapy Services for Long COVID
Gaps in health systems, professional visibility, and research have limited the delivery of occupational therapy services to people with long COVID. In this section, we identify three of these issues and suggest actions that people at every level of the occupational therapy profession can take to resolve them.
First, the referral pathway to occupational therapy services for adults in the United States may inadvertently exclude many of those with long COVID symptoms. Health care organizations and payers often place occupational therapy services in an acute– subacute–home/community progression, indexed to an acute event. This excludes people who develop long COVID after mild infections that did not require medical care. Outpatient services are often difficult to access for people who are not covered by Medicare or private insurance. Even people who can access care may not be referred for therapy, because many have been found to score in an “unimpaired” range on common brief cognitive screening instruments (Velichkovsky et al., 2023). In addition, because long COVID has no accepted clinical diagnosis—another typical entry point for rehabilitation—referrals for rehabilitation services might not be considered. Because a diagnosis is vital to research, practice, and insurance formularies, the connection to rehabilitation may not be made. We suggest that occupational therapy practitioners can help connect people with long COVID to service delivery systems by promoting and coordinating long COVID care on their interdisciplinary teams; educating their referral sources to ensure awareness that occupational therapy services are available for their clients and patients; and using performance-based assessments of functional cognition, in addition to neuropsychological measures, to assess the impact of long COVID symptoms on performance.
Second, the occupational therapy profession can position itself as a leader in long COVID intervention. In 2021, OT Practice published an article that focused on the impact of severe COVID-19 illness (Wilcox et al., 2021), but AOTA has not issued Practice Guidelines or public-facing client resources for long COVID. Leadership in the profession can increase the visibility of what occupational therapists can do for people experiencing long COVID. This could be accomplished through public awareness campaigns; cross-disciplinary teaming and coordination; and health systems advocacy to support providers in referral, staffing, and documentation and billing options for occupational therapy assessment and intervention. In addition, a call for best practice papers for long-COVID intervention would fill a gap in practice guidance as research progresses. These steps would increase recognition of and referral to occupational therapy services and the confidence of occupational therapy practitioners to address the needs of people with long COVID.
Third and finally, researchers must move more quickly to provide the evidence needed to address occupational performance deficits associated with long COVID. The small and mixed body of current work is insufficient to support clinical practice (Negrini et al., 2021; Watters et al., 2021). Occupational scientists must generate the rigorous evidence needed to support the delivery of high-quality, effective occupational therapy services to people with long COVID, especially given that occupational therapy explicitly addresses one of the WHO’s proposed diagnostic criteria. Occupational therapy is well positioned to contribute vital assessment data on functional impairment to the medical records of people with long COVID. This will strengthen the value of the EMR-based research, which currently lacks indicators of function. Managers can work with their organization’s billing and bioinformatics teams to ensure that practitioners are able to document quantitative scores from functional outcomes assessments in the medical record, thus contributing valuable data to population-level research. Researchers can partner with multidisciplinary teams to conduct studies that establish assessment sensitivity, intervention effectiveness, and long-term outcomes to guide practice and support reimbursement.
Conclusion
Now is the time for the field of occupational therapy to contribute to the research and treatment of long COVID–related disability. Occupational therapy has the professional prerogative, ethical mandate, and immediate opportunity to contribute to science, improve care, prevent ongoing disability, and provide tailored interventions so that people with long COVID can return to thriving and meaningful lives.
Footnotes
Acknowledgments
We thank the individuals and families affected by long COVID who have shared their experiences with us. We also thank the University of Wisconsin–Madison Departments of Medicine (award number 233-AAL6267) and Education, and the Wisconsin Partnership Project (Award No. 5129-2023) for supporting our work in this emerging area of research and practice.
