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Long COVID: Examining Long-Term Health Effects of COVID-19 and Implications for the Social Security Administration: Proceedings of a Workshop (2022)

Chapter: 6 Clinical Practices and System Approaches for Improving Health and Recovery from Long COVID

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Suggested Citation:"6 Clinical Practices and System Approaches for Improving Health and Recovery from Long COVID." National Academies of Sciences, Engineering, and Medicine. 2022. Long COVID: Examining Long-Term Health Effects of COVID-19 and Implications for the Social Security Administration: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26619.
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6

Clinical Practices and System Approaches for Improving Health and Recovery from Long COVID

Monica Verduzco-Gutierrez, professor and chair of the Department of Rehabilitation Medicine at the University of Texas Health San Antonio, introduced the final panel of the workshop, which examined clinical practices and system approaches for improving health and recovery from Long COVID. In this session, speakers described and explored systematic issues pertaining to Long COVID, and discussed how guidance statements, care models, and policy can help to improve care for patients with Long COVID.

CLINICAL GUIDANCE STATEMENTS

Steven Flanagan, professor and chair of rehabilitation medicine and medical director of Rusk Rehabilitation at NYU Langone Health, shared the experiences of the American Academy of Physical Medicine and Rehabilitation (AAPM&R) in developing and disseminating guidance on Long COVID for its members. AAPM&R represents about 10,000 physiatrists, who are medical doctors specializing in disability and function. Physiatrists treat disability and impairments that result from injury or disease in nearly every organ system, he said, which makes them uniquely qualified to deal with Long COVID. About a year ago, AAPM&R called on President Biden’s administration and Congress to put together a plan of action to deal with the public health crisis of Long COVID, said Flanagan. With upwards of 24 million people experiencing or having experienced symptoms of Long COVID (American Academy of Physical Medicine and Rehabilitation, 2022), the resources, infrastructure, and providers to deliver necessary care are needed, with focus on ensuring equity

Suggested Citation:"6 Clinical Practices and System Approaches for Improving Health and Recovery from Long COVID." National Academies of Sciences, Engineering, and Medicine. 2022. Long COVID: Examining Long-Term Health Effects of COVID-19 and Implications for the Social Security Administration: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26619.
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in care and equal access to care, regardless of race, ethnicity, socioeconomic status, gender, sexual orientation, or other characteristics, said Flanagan. The call to action had an effect, said Flanagan, with the National Institutes of Health and the Biden Administration making strides toward delivering the resources necessary.

Flanagan told workshop participants about AAPM&R’s efforts in this area. Together with Johns Hopkins, AAPM&R developed a dashboard that shows estimated PASC cases by state and county. The dashboard uses an assumption that 10 to 30 percent of adults who survived COVID-19 will continue to have symptoms at 6 months postinfection (American Academy of Physical Medicine and Rehabilitation, 2022). In March 2021, AAPM&R assembled a collaborative of providers, patients, caregivers, and representatives from post-COVID clinics. The PASC Collaborative’s goals are to delineate existing best practices, disseminate lessons learned, and develop resources for primary care providers and PASC clinics.

The PASC Collaborative is multidisciplinary, and its leadership includes specialists in physiatry, population health, pulmonary medicine, and critical care. Patients and caregivers are important to the collaborative because they are “in the trenches,” said Flanagan; their experiences provide valuable insight for guidance statements. Collaborative members also include representatives from 35 post-COVID clinics, such as physicians, rehabilitation professionals, psychologists, and others. The collaborative uses a systematic process for the development of guidance statements and involves an equity subcommittee to ensure that the statements address equal access and care for subpopulations.

Thus far, the PASC Collaborative has published guidance statements on cognitive symptoms, breathing discomfort and respiratory sequelae, and fatigue.1 The statements, said Flanagan, are based on the experience and expertise of people working and living in the world of Long COVID. Some of the evidence available is from conditions similar to PASC, but the guidance statements primarily integrate current experience with the limited evidence available for assessing and managing Long COVID. Guidance statements are published on a rolling basis. Guidance statements in development will address cardiac impairment, pediatric Long COVID, and autonomic dysfunction; future topics include headache and vertigo. Flanagan emphasized that developing guidance is an iterative process because evidence about the etiology, assessment, and risks for Long COVID is just beginning to emerge. While this process will continue for years, he said, it is critical to get guidance out to the providers and clinics who are treating patients right now.

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1 PASC Collaborative Guidance statements: https://www.aapmr.org/members-publications/covid-19/multidisciplinary-quality-improvement-initiative (accessed May 19, 2022).

Suggested Citation:"6 Clinical Practices and System Approaches for Improving Health and Recovery from Long COVID." National Academies of Sciences, Engineering, and Medicine. 2022. Long COVID: Examining Long-Term Health Effects of COVID-19 and Implications for the Social Security Administration: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26619.
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INTEGRATED CARE MODEL: ADULT POPULATION

Integrated care, said Benjamin Abramoff, assistant professor of physical medicine and rehabilitation and director of the Post-COVID Assessment and Recovery Clinic at the University of Pennsylvania, is a system of care that focuses across the whole spectrum of illness and addresses the health needs of the whole person. Usually a team-based approach that includes providers from multiple specialties, as well as care providers and families, integrated care models have been used in multiple complex conditions, including spinal cord injury, hemophilia, multiple sclerosis, and stroke. This is a beneficial model for Long COVID for a number of reasons, said Abramoff. Individuals who have survived COVID-19 may have significant deficits in physical and cognitive functioning and worsened quality of life. They often have a feeling that they are being “shuffled from provider to provider,” and lack a home in the medical system. Because patients may experience symptoms in many different domains, they are sometimes unsure of where to go or who to talk to. Abramoff shared that he has heard from many patients that their provider ordered a few tests and then told them “there is nothing wrong with you.” Clinical expertise in Long COVID is lacking; providers are gaining experience, but the knowledge gap is still an ongoing challenge.

Several organizations, said Abramoff, recommend integrated care for Long COVID including the National Institute for Health and Care Excellence (NICE) and CDC. For example, interim guidance from CDC states:

Health care professionals may also consider referral to multidisciplinary post-COVID-19 care centers, where available, for additional care considerations. Multidisciplinary post-COVID care centers based in a single physical location can provide a comprehensive and coordinated treatment approach to COVID-19 aftercare. (CDC, 2021a)

Abramoff and his colleagues conducted a survey of post-COVID clinics to see how integrated care models have been implemented at different locations (Dundumalla et al., 2022). The survey was completed in May 2021; 45 clinics in 25 states participated. Most of the clinics were homed in physical medicine and rehabilitation, but a high percentage of clinics were also homed in pulmonology and internal medicine. All clinics were multidisciplinary to some extent, said Abramoff, but there was wide variation in the number of specialties routinely involved, the number that are part of the team, and the number that are available during the initial patient visit (Figure 6-1). Around half hold regular, formal interdisciplinary team meetings; Abramoff noted that specialists may be communicating through other channels as well. Abramoff shared a few other interesting findings from the survey. Just over half of clinics directly managed the behavioral health needs of their patients, a third hosted

Suggested Citation:"6 Clinical Practices and System Approaches for Improving Health and Recovery from Long COVID." National Academies of Sciences, Engineering, and Medicine. 2022. Long COVID: Examining Long-Term Health Effects of COVID-19 and Implications for the Social Security Administration: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26619.
×
Image
FIGURE 6-1 Specialties available during the initial patient visit in post-COVID clinics.
NOTE: PM&R = physical medicine and rehabilitation.
SOURCE: Benjamin Abramoff presentation, March 22, 2022, based on data from Dundumalla et al., 2022, p. 352, © 2022 American Academy of Physical Medicine and Rehabilitation.
Suggested Citation:"6 Clinical Practices and System Approaches for Improving Health and Recovery from Long COVID." National Academies of Sciences, Engineering, and Medicine. 2022. Long COVID: Examining Long-Term Health Effects of COVID-19 and Implications for the Social Security Administration: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26619.
×

support groups, about two-thirds completed disability paperwork, and almost a quarter reported that they needed more help with staffing, physicians, or case management support. All clinics have processes to involve multiple specialties, and most routinely involve specialties rather than using a hub-and-spoke model. Physical therapy, pulmonology, physical medicine and rehabilitation, neurology, and cardiology are involved in the treatment team in over two-thirds of the clinics.

Abramoff shared his experiences at the Penn Medicine Post-COVID Assessment and Recovery Clinic. The clinic is centered in physical medicine and rehabilitation, and the team has a background in taking care of patients with multisystem, complex medical issues. The team includes a case manager who often is part of the initial patient visit, and they use the hub-and-spoke model to connect with other specialists and providers. The clinic has developed an algorithm that is based on the most common complaints and charts a path to address them using an interdisciplinary method (Figure 6-2).

Abramoff summarized his main points:

  • Integrated care is a potential method to improve the care of individuals with Long COVID.
  • Numerous integrated care models have been implemented.
  • These models can be resource intensive and require significant coordination between providers.
  • No research yet suggests if one model is more effective than others.

INTEGRATED CARE MODEL: PEDIATRIC POPULATION

As of March 10, 2022, said Amanda Morrow, assistant professor of physical medicine and rehabilitation at the Johns Hopkins School of Medicine and codirector of the Pediatric Post-COVID-19 Rehabilitation Clinic at Kennedy Krieger Institute, there have been almost 13 million pediatric cases of COVID-19 in the United States, accounting for almost 20 percent of the total cases (American Academy of Pediatrics, 2022). The good news, she said, is that the rates of hospitalization and death are quite low. However, a subset of children—even those with mild illness—will go on to develop Long COVID. Prevalence estimates of persisting symptoms after COVID-19 infection range widely, between 4 and 66 percent (Zimmerman et al., 2021). Fewer studies have been done in the pediatric population than in the adult population, and most studies have had serious limitations. Even if the prevalence of Long COVID is on the lower end of the estimates, she said, this would still affect a significant number of children in the United States.

Children with Long COVID complain of a variety of symptoms across different organ systems, including symptoms of fatigue, cognitive difficulties,

Suggested Citation:"6 Clinical Practices and System Approaches for Improving Health and Recovery from Long COVID." National Academies of Sciences, Engineering, and Medicine. 2022. Long COVID: Examining Long-Term Health Effects of COVID-19 and Implications for the Social Security Administration: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26619.
×
Image
FIGURE 6-2 Algorithm used at Penn Medicine post-COVID clinic for providing care to Long COVID patients.
NOTE: UPHS = University of Pennsylvania Health System; PM&R = physical medicine and rehabilitation; EKG = electrocardiogram; DOE = Department of Education; GSPP = Good Shepherd Penn Partners; PTSD = post-traumatic stress syndrome.
SOURCE: Benjamin Abramoff presentation, March 22, 2022.
Suggested Citation:"6 Clinical Practices and System Approaches for Improving Health and Recovery from Long COVID." National Academies of Sciences, Engineering, and Medicine. 2022. Long COVID: Examining Long-Term Health Effects of COVID-19 and Implications for the Social Security Administration: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26619.
×

mood concerns, headaches, sleep disturbance, dizziness, and lightheadedness. These symptoms are “really impacting the quality of life of our children,” and several multidisciplinary clinics have opened to address these symptoms and care for these children. Morrow stated there are currently 11 pediatric Long COVID clinics across the country, as well as 3 clinics specific to MIS-C. There is a history of using the multidisciplinary care model for other complex medical illnesses in both adults and children, including sickle cell disease, traumatic brain injury, pediatric cancers, and cystic fibrosis. The benefits of multidisciplinary specialty clinics include a holistic approach to care, increased communication and coordination, and decreased appointment burden, which can be helpful for disorders with multiple organ system involvement. This approach also has challenges, she said, such as having the institutional infrastructure to support a clinic with adequate space, and managing insurance coverage issues, including limits placed on the number of providers a patient can see in one day. In addition, patient access to clinics and subspecialists vary geographically. Morrow emphasized that multidisciplinary specialty clinics are not designed to take the place of a primary care provider for routine health screening and preventative services, though she said close coordination is essential.

The Kennedy Krieger Institute offers a multidisciplinary, team-based approach that addresses the medical, psychosocial, cognitive, and physical needs of young patients. The goal of the clinic, she said, is to improve patients’ overall functioning and ability to participate in their day-to-day tasks, physical activities, school, extracurricular activities, and social engagement. During a patient’s initial visit to the clinic, they will be seen by neurology, pediatric physical medicine and rehabilitation, physical therapy, behavioral psychology, and social work. After this visit, the team discusses their assessments and develops a unified treatment plan. Patients can also undergo neuropsychology evaluation, and can meet with an education specialist to develop school-based recommendations. If additional referrals are needed, the clinic has close relationships with specialists who are familiar with Long COVID, and patients can be seen quickly if needed.

For children and adolescents with Long COVID, said Morrow, the emphasis should be on keeping kids in school as much as possible to help normalize their routines, which has educational, psychosocial, and physical benefits. There are accommodations that can help children with Long COVID stay in school and be successful, including planned rest breaks, increased time for testing, and limited assignments. Morrow said it is important to ensure that teachers and staff understand the needs of these children and are able to support them. Adolescents who are transitioning to adulthood could receive care at either an adult or a pediatric clinic, though Morrow suggested that a pediatric clinic may be more appropriate for adolescents who still have school-based concerns.

Suggested Citation:"6 Clinical Practices and System Approaches for Improving Health and Recovery from Long COVID." National Academies of Sciences, Engineering, and Medicine. 2022. Long COVID: Examining Long-Term Health Effects of COVID-19 and Implications for the Social Security Administration: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26619.
×

Morrow and her colleagues have been involved in the development of the AAPM&R guidance statement on pediatric care, which will be coming out shortly. The clinic is also involved in an International Pediatric Post-COVID Condition in Children Collaboration (IP4C) (Brackel et al., 2022), which is currently researching program and clinic models, definitions used, and patient characteristics. The goals of this collaboration, said Morrow, are to develop guidelines, and to create standardized definitions and data harmonization tools to better understand pathophysiology and treatment.

In closing, Morrow highlighted key messages:

  • Similar to integrated care models in other complex pediatric illnesses, children with Long COVID may also benefit from multidisciplinary, team-based approaches to care.
  • Areas of special consideration include attention to educational needs as well as appropriate transitions of care when reaching adulthood.
  • Further research can help determine optimal models of clinical care in pediatric Long COVID.

OVERCOMING BARRIERS TO HEALTH AND SOCIAL INEQUITIES

Zackary Berger, associate professor of medicine at the Johns Hopkins School of Medicine and Johns Hopkins School of Public Health, discussed the disparities and inequities in COVID-19 and Long COVID through the lens of his research with undocumented immigrants in Baltimore. There are a number of vulnerabilities associated with being undocumented (Derose et al., 2007), he said, including limited education, occupational opportunities, and income; limited access to social services; low English proficiency; crowded and poorly maintained residences; stigma and marginalization; involvement with the carceral and/or immigration system; and being overrepresented in the domain of “essential workers.” While COVID-19 is a pandemic, said Berger, it can also be seen as a syndemic; that is, the aggregation of the concurrent pandemics of COVID-19, racism and segregation, and socioeconomic inequalities. Each of these pandemics interact and reinforce one another to exacerbate the burden of disease. Berger explained that from a medical anthropology perspective, the COVID-19 pandemic experience embodies the interactions of the individual experience, social aspects of the disease, and the body politic (i.e., the influences of the political and regulatory milieu) (Scheper-Hughes and Lock, 1987).

Berger told workshop participants about his research in Baltimore that focuses on undocumented immigrants’ experience with COVID-19. Callers

Suggested Citation:"6 Clinical Practices and System Approaches for Improving Health and Recovery from Long COVID." National Academies of Sciences, Engineering, and Medicine. 2022. Long COVID: Examining Long-Term Health Effects of COVID-19 and Implications for the Social Security Administration: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26619.
×

to the Esperanza Center Clinic hotline for COVID-19 information were recruited to participate in a survey; Berger emphasized that this was not a randomized sample but instead a sample enriched in people with COVID-19 experiences in order to understand “how people are actually living through this pandemic.” Surveys were conducted in Spanish over the telephone and in interviews from May to July 2021, said Berger. These data are not published at this time, but preliminary results indicate that respondents were often not contacted by the public health department to be notified about exposure, the majority of respondents were concerned about getting care because of their undocumented status, and a plurality of these individuals thought they did not receive adequate medical care when sick with COVID-19.

There are multiple structural factors that worsen symptoms and worsen the effect of COVID-19, said Berger (Figure 6-3). Individual factors such as substance use or baseline health issues are exacerbated by existing health inequities, structural injustice, structural racism, and epistemic injustice. For immigrants and other marginalized populations, said Berger, COVID-19 is Long COVID, saying “We are dealing with a slow-moving, multidimensional, multidomain social catastrophe.” All of these issues need to be addressed by primary care providers, advocates, patients, caregivers, and residents of the United States.

Berger offered suggestions on what needs to be done to address Long COVID on a number of levels. First, clinicians need to evaluate each patient holistically, and to reduce harm to patients while validating, assessing, and documenting their experiences. In addition, clinicians need to recognize the challenges of epistemic injustices and the harms caused to vulnerable populations. Berger explained that epistemic injustice can occur when patients are not listened to, are misdiagnosed, or are mismanaged; this is a phenomenon that patients and caregivers are “all too familiar with,” particularly in chronic and poorly understood conditions such as Long COVID. Clinicians need to acknowledge the bias, stigma, fears, and assumptions that surround Long COVID, and discuss how our systems exacerbate health care barriers and perpetuate intersectional injustices. Clinicians should not limit themselves to the individual or biomedical domain, said Berger, but should work to reduce inequities by, for example, advocating for eviction moratoriums, providing economic support for workers, providing language concordant care, and decarcerating. In short, said Berger, “We need to empower and emphasize structural equity and epistemic humility.” We need solidarity between health care workers and patients, we need to empower patients to take control, and we need to listen to those with Long COVID about their experiences, he concluded.

Berger summarized his main ideas:

Suggested Citation:"6 Clinical Practices and System Approaches for Improving Health and Recovery from Long COVID." National Academies of Sciences, Engineering, and Medicine. 2022. Long COVID: Examining Long-Term Health Effects of COVID-19 and Implications for the Social Security Administration: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26619.
×
Image
FIGURE 6-3 Characteristics associated with COVID-19 and Long COVID.
SOURCE: Republished with permission of John Wiley & Sons, from Berger et al., 2021, p. 523, in Zackary Berger presentation, March 22, 2022.
Suggested Citation:"6 Clinical Practices and System Approaches for Improving Health and Recovery from Long COVID." National Academies of Sciences, Engineering, and Medicine. 2022. Long COVID: Examining Long-Term Health Effects of COVID-19 and Implications for the Social Security Administration: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26619.
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  • COVID-19 and its long-term sequelae are strongly influenced by social determinants such as poverty and by structural inequalities such as racism and discrimination.
  • Primary care providers are in a unique position to provide and coordinate care for vulnerable patients with Long COVID.
  • Potential policy measures include strengthening primary care, optimizing data quality, and addressing the multiple nested domains of inequity.

DISCUSSION

Following the presentations, Verduzco-Gutierrez moderated a question- and-answer session, posing questions from planning committee members, representatives from SSA, and other workshop participants.

What is the role of telemedicine in Long COVID care, particularly for mental health issues?

Telehealth visits can be a great initial screening tool, said Abramoff, and are used by many if not most Long COVID clinics for the initial evaluation. Telehealth can be an effective way to connect with patients who may fatigue easily or have difficulty getting to an appointment, as well as patients who do not live in an area with a Long COVID clinic. Of course, he said, in-person follow-up is necessary to maximize outcomes and do further assessment.

What types of structured tests or assessments are useful for evaluating patients with Long COVID?

Some standardized tests may be useful for certain patients and clinicians, said Berger. However, he said that he worries about “the potential for ruling people in or out of having Long COVID on the basis of a structured instrument.” This happens a lot in other chronic conditions such as depression or fibromyalgia, he said, with patients being “ruled out” if they do not meet certain criteria. Verduzco-Gutierrez added that another risk of structured instruments is that people may be “ruled in” for a condition because of symptoms that are related but not the same. For example, she said, a Long COVID patient may indicate that they have trouble concentrating on a depression questionnaire, but their inability to concentrate is caused by brain fog rather than depression.

Are there any national efforts to capture patients who traditionally fall through the cracks and may not have access to care for COVID-19 or Long COVID?

Since the start of the pandemic, said Berger, there has been heterogeneity and insufficient data gathering on vulnerable populations. The COVID

Suggested Citation:"6 Clinical Practices and System Approaches for Improving Health and Recovery from Long COVID." National Academies of Sciences, Engineering, and Medicine. 2022. Long COVID: Examining Long-Term Health Effects of COVID-19 and Implications for the Social Security Administration: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26619.
×

Tracking Project was developed in an attempt to gather data that the CDC was not, but there is still a lack of data on populations such as LGBTQ individuals or people who speak a language other than English. “We are not where we should be” regarding collecting data for vulnerable communities, he said. Berger added that there have been recommendations that a standing group of health care workers undertake a survey of populations affected by COVID-19. This would be a combination of a work program and a health census program, he said. Much of the research that has been conducted on COVID-19 has been done via the Internet or phone, which misses a lot of people. “If we really want to find people that are not being found,” he said, “we need to go to where they are.”

Further, he said, we need equal access to care in the broadest sense. Just being able to walk in the door of a clinic does not guarantee equal care, because inequities persist even with equal access. Verduzco-Gutierrez added that there is a need for policy to ensure that multidisciplinary clinics are able to care for all the patients who need it, regardless of ability to pay or insurance coverage. She added that some patients may not be eligible for care at a clinic because they were not able to access a test to document their COVID-19 infection. This phenomenon exacerbates the existing inequities in access.

How can primary care providers be supported in screening for and recognizing Long COVID?

The guidance statements from AAPM&R are designed to address the questions that primary care providers may have about symptoms, said Abramoff. There are efforts to take these statements and make them easier to use by primary providers by creating infographics, evaluation templates, and other tools. The effort to put the necessary information in the hands of clinicians across the country is ongoing, he said. Morrow added that the pediatric guidance that will be coming out soon is designed to be helpful for primary care pediatricians; it is symptom based but includes guidance on initial workup and treatment recommendations.

How are integrated specialty clinics measuring the effectiveness of their work?

This is a challenge, said Abramoff. Many clinics use their own measurement tools that were developed at the beginning of the pandemic. There are efforts to standardize tools, but these efforts take time. Verduzco-Gutierrez added that the demand for care is so high in some clinics that it can be difficult to get patients back in to see if things are working.

Suggested Citation:"6 Clinical Practices and System Approaches for Improving Health and Recovery from Long COVID." National Academies of Sciences, Engineering, and Medicine. 2022. Long COVID: Examining Long-Term Health Effects of COVID-19 and Implications for the Social Security Administration: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26619.
×

What are the challenges in differentiating the effect of COVID-19 infection from the effect of the pandemic in general in pediatric populations, particularly in terms of developmental and cognitive delay?

The pandemic and associated school closures have definitely had an impact on kids’ mental health and overall well-being, said Morrow. Neuropsychology testing that looks at specific cognitive constructs has found issues with attention in some Long COVID patients; this is less likely to be a pandemic effect, particularly when we control for mood symptoms. However, the effect of the pandemic in general is “something we are always thinking about.”

Are children with Long COVID getting the accommodations they need in schools? As they get these accommodations, will that potentially help other students with disabilities that are not related to COVID-19?

Simply increasing awareness of Long COVID and how an illness can affect overall function and ability to participate in school can be helpful, said Morrow, and this awareness can carry over to other conditions as well. Establishing protocols for accommodations for students with Long COVID certainly has the potential to help others.

What has been the experience of clinics that help patients with disability paperwork? Do patients tend to get denied or get approved?

Abramoff said that the patients at his clinic tend to get covered but it is challenging, with multiple rounds of back and forth. He said that the process wears down some patients and they “stop fighting after a while” because of the enormous burden of filling out paperwork and updating it regularly. Every employer and insurance company weighs different information, and it can be challenging for a provider to give information in the way that is most supportive of the patient. Berger added that some patients fall through the cracks because they simply do not have the energy or resources to keep filling out the forms. “It takes energy to be the squeaky wheel,” he said, and many patients do not have the time to continue the fight. Verduzco-Gutierrez agreed that the process is overwhelming, and she added that some disability insurance companies deny patients because the companies do not take into account symptoms like postexertional malaise or the unseen fatigue that follows cognitive work.

Suggested Citation:"6 Clinical Practices and System Approaches for Improving Health and Recovery from Long COVID." National Academies of Sciences, Engineering, and Medicine. 2022. Long COVID: Examining Long-Term Health Effects of COVID-19 and Implications for the Social Security Administration: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26619.
×

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Suggested Citation:"6 Clinical Practices and System Approaches for Improving Health and Recovery from Long COVID." National Academies of Sciences, Engineering, and Medicine. 2022. Long COVID: Examining Long-Term Health Effects of COVID-19 and Implications for the Social Security Administration: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26619.
×
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Suggested Citation:"6 Clinical Practices and System Approaches for Improving Health and Recovery from Long COVID." National Academies of Sciences, Engineering, and Medicine. 2022. Long COVID: Examining Long-Term Health Effects of COVID-19 and Implications for the Social Security Administration: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26619.
×
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Suggested Citation:"6 Clinical Practices and System Approaches for Improving Health and Recovery from Long COVID." National Academies of Sciences, Engineering, and Medicine. 2022. Long COVID: Examining Long-Term Health Effects of COVID-19 and Implications for the Social Security Administration: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26619.
×
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Suggested Citation:"6 Clinical Practices and System Approaches for Improving Health and Recovery from Long COVID." National Academies of Sciences, Engineering, and Medicine. 2022. Long COVID: Examining Long-Term Health Effects of COVID-19 and Implications for the Social Security Administration: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26619.
×
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Suggested Citation:"6 Clinical Practices and System Approaches for Improving Health and Recovery from Long COVID." National Academies of Sciences, Engineering, and Medicine. 2022. Long COVID: Examining Long-Term Health Effects of COVID-19 and Implications for the Social Security Administration: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26619.
×
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Suggested Citation:"6 Clinical Practices and System Approaches for Improving Health and Recovery from Long COVID." National Academies of Sciences, Engineering, and Medicine. 2022. Long COVID: Examining Long-Term Health Effects of COVID-19 and Implications for the Social Security Administration: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26619.
×
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Suggested Citation:"6 Clinical Practices and System Approaches for Improving Health and Recovery from Long COVID." National Academies of Sciences, Engineering, and Medicine. 2022. Long COVID: Examining Long-Term Health Effects of COVID-19 and Implications for the Social Security Administration: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26619.
×
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Suggested Citation:"6 Clinical Practices and System Approaches for Improving Health and Recovery from Long COVID." National Academies of Sciences, Engineering, and Medicine. 2022. Long COVID: Examining Long-Term Health Effects of COVID-19 and Implications for the Social Security Administration: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26619.
×
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Suggested Citation:"6 Clinical Practices and System Approaches for Improving Health and Recovery from Long COVID." National Academies of Sciences, Engineering, and Medicine. 2022. Long COVID: Examining Long-Term Health Effects of COVID-19 and Implications for the Social Security Administration: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26619.
×
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Suggested Citation:"6 Clinical Practices and System Approaches for Improving Health and Recovery from Long COVID." National Academies of Sciences, Engineering, and Medicine. 2022. Long COVID: Examining Long-Term Health Effects of COVID-19 and Implications for the Social Security Administration: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26619.
×
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Suggested Citation:"6 Clinical Practices and System Approaches for Improving Health and Recovery from Long COVID." National Academies of Sciences, Engineering, and Medicine. 2022. Long COVID: Examining Long-Term Health Effects of COVID-19 and Implications for the Social Security Administration: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26619.
×
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Suggested Citation:"6 Clinical Practices and System Approaches for Improving Health and Recovery from Long COVID." National Academies of Sciences, Engineering, and Medicine. 2022. Long COVID: Examining Long-Term Health Effects of COVID-19 and Implications for the Social Security Administration: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26619.
×
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Suggested Citation:"6 Clinical Practices and System Approaches for Improving Health and Recovery from Long COVID." National Academies of Sciences, Engineering, and Medicine. 2022. Long COVID: Examining Long-Term Health Effects of COVID-19 and Implications for the Social Security Administration: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26619.
×
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Suggested Citation:"6 Clinical Practices and System Approaches for Improving Health and Recovery from Long COVID." National Academies of Sciences, Engineering, and Medicine. 2022. Long COVID: Examining Long-Term Health Effects of COVID-19 and Implications for the Social Security Administration: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26619.
×
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'Long COVID' refers to the wide range of long-lasting symptoms experienced by some patients after a SARS-CoV-2 infection. The most common symptoms include fatigue, headache, brain fog, shortness of breath, hair loss, and pain. At this time, there are many knowledge gaps related to Long COVID, including the prevalence of the condition, the impact of the symptoms on survivors' ability to function, and the long-term course of the condition. While many individuals with Long COVID recover within one year, others experience little or no decrease in symptom severity over time.

Long COVID symptoms can affect a person's ability to work and otherwise function in daily life, so people with the condition may need to utilize programs such as Social Security Disability Insurance (SSDI) and the Supplemental Security Income Program (SSI). The Social Security Administration (SSA), which administers both of these programs, requested that the National Academies of Sciences, Engineering, and Medicine host a public workshop to discuss research into the long-term health effects of COVID-19, their impacts on individuals and populations, and how the SSDI and SSI programs can support individuals who suffer disability as a result of Long COVID. This publication summarizes the presentation and discussion of the workshop.

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