The COVID-19 pandemic has presented multiple challenges for patients, providers, healthcare systems, and policymakers, including how to adequately address the needs of people living with Long COVID as part of pandemic recovery efforts. Leveraging the insights and techniques of health services research (HSR) is key to delivering high-value care equitably to these patients.
Long COVID affects multiple and varied organ systems. Symptoms range from mild illness such as fatigue or shortness of breath to debilitating chronic conditions like diabetes and organ damage to the liver, lungs, or heart. Some individuals with Long COVID experience chronic fatigue syndrome. A range of studies have found that between five and 30 percent of individuals—at least 16 million Americans—who have had COVID-19 may experience post-COVID symptoms. Estimates for Long COVID could increase as more people are infected with COVID-19 over time and if new variants emerge.
The Social Determinants of Long COVID
The impacts of Long COVID, and its associated conditions, vary across individuals and are influenced by a person’s social determinants of health, such as one’s geographic location; health insurance status; social support; place of employment; and demographic characteristics, including age, ethnicity, race, gender, or sexual orientation. Long COVID effects could exacerbate existing health disparities, particularly among Black and brown communities, gender minority communities, people with lower incomes, people with disabilities, older adults, and other communities more likely to have worse access to healthcare services. The HSR field is well-position to guide appropriate and equitable responses to addressing critical issues of Long COVID among various groups.
Integrating Long COVID Care into Primary Care
A scoping review of healthcare pathways for Long COVID care planning found that most studies recommended that primary care providers deliver the majority of patient care. In addition to conducting the primary clinical assessment, first-point-of-contact providers can perform a thorough patient clinical history, assess the patient’s functional abilities, and examine long-lasting cognitive, physical, psychiatric, and psychological symptoms due to prior COVID-19 infection. Referrals to appropriate specialists, such as community care networks, or secondary care, such as nursing homes, rehabilitation centers, or the patient’s home should be prioritized. Providers such as occupational therapists, behavioral health specialists, physical therapists, and speech therapists can support symptom management. A multispecialty and multidisciplinary approach should include pediatricians to address Long COVID among younger individuals.
A qualitative study on EHR documentation of Long COVID for the Department of Veterans Affairs (VA) patients found that clinicians faced challenges determining whether specific symptoms are attributable to Long COVID, particularly among patients with complex medical histories. The absence of specific biomarkers for Long COVID is an additional challenge; some clinicians question the validity of Long COVID. Furthermore, care fragmentation and inadequate care coordination networks for post-COVID-19 care are barriers to effective patient care. Long COVID treatment needs to be integrated into primary care.
Engage Patients in Shared Decision-Making and Care Management
Educating and supporting patients with shared decision-making and self-management of their symptoms outside the clinical setting could be helpful. Online support programs and patient-centered telemedicine services can provide health care and special support to Long COVID patients. Successful models require good communication between patients and healthcare professionals, care management to reduce potential health inequities and inequalities, and continuing education for healthcare professionals on Long COVID sequela, available therapies, and care management.
The National Research Plan and Opportunities for Health Services Researchers
The National Research Action Plan on Long COVID presents the first U.S. government-wide national research plan on moving forward diagnosis, prevention, treatment, and supplying support and services for people and families experiencing Long COVID. There are mixed reviews of the national research plan. The current definition for Long COVID is broad, and there are opposing views on what Long COVID is. Health services researchers can help to organize the evidence on Long COVID for different subgroups, including which interventions are effective, how to mitigate health disparities and practical strategies for care coordination.
Practical approaches to address Long COVID require multidisciplinary and multisectoral collaborations among patients and their families, the pharmaceutical industry, academic researchers, private and non-profit research organizations, the government, community-based organizations, and professional organizations. Congressional funding to support the National Research Action Plan on Long COVID could holistically boost efforts to address Long COVID. Additionally, a Long COVID compensation program at the national level could alleviate the health coverage financial burden on health care systems, patient and families, and employers. Health service research findings must be disseminated in easily accessible ways to providers, particularly in primary care.
As researchers and policymakers fund and design new medical interventions for Long COVID patients, it is critical that they also include health services research in their research programs as delivering high-value care equitably or in a scalable manner is not an automatic feature of new innovations. Within a population that is already suffering from health disparities, poorly designed or targeted dissemination efforts could worsen this health outcome gap.