Integrated Care Models for Long Coronavirus Disease

Abstract

Professional or governmental agencies and organizations have developed guidelines to define the problem and evaluate and manage patients with Post-Acute Sequelae of SARS CoV-2 (PASC). Multidisciplinary models largely exist in academic centers and larger cities; however, most care for PASC patients is provided by the primary care providers. The American Academy of Physical Medicine and Rehabilitation has been in the forefront in releasing consensus statements as a part of the long COVID collaborative.

Key points

• •The wide range of persistent symptoms in long COVID requires a coordinated response from multiple medical specialties.
• •Formalized models of care systems and multidisciplinary collaborations began in early 2021 as health care providers recognized the needs of the affected population.
• •Multidisciplinary models largely exist in academic centers and larger cities; however, most care for PASC patients is provided by the primary care providers.

Introduction

As of July 2022, there have been more than 540 million confirmed cases of coronavirus disease (severe acute respiratory syndrome coronavirus 2 [SARS CoV-2], coronavirus disease 2019 [COVID-19]) during the global pandemic.¹ Severe acute cases of SARS-CoV-2 respiratory illness continue to strain communities, health care systems, and nations. Evidence-based medical treatments have greatly improved patient outcomes; however, a growing population of survivors with persisting long-term complications has been recognized. This syndrome has been labeled as long COVID or the Post-Acute Sequelae of SARS CoV-2 (PASC).^{2 , 3}

There is no single accepted definition of PASC. However, PASC is characterized by persistent and/or delayed symptoms or complications beyond 4 weeks of symptom onset or 3 months after a confirmed SARS CoV-2 infection.³ The population that experiences PASC is extremely heterogeneous, from those initially asymptomatic with no prior comorbidities to those with preexisting respiratory conditions and prolonged intensive care unit (ICU) stays. The exact prevalence of PASC in the population is unknown with reports of patients with PASC ranging from 10% to 81% of confirmed cases.⁴ Given this large population, treatment resource, health care needs, and social costs will continue to be a growing burden on already exhausted health care systems.⁵

Background

Models of Care Concept

The concept of models of care is not new to medicine. In the United States, multiple models of care exist for conditions such as burns, traumatic brain injury, diabetes, chronic obstructive pulmonary disease, and spinal cord injury.^{6 , 7} These model systems standardize assessment, patient care and help formulate, and study outcomes. These efforts impact policy reform, patient and physician behaviors, and further program development.⁷

Lack of Early Models of Care

COVID-19 is a multisystem disease with factors such as inflammation, endothelial dysfunction, and hypercoagulability leading to a diversity of end-organ damage over the course of the illness.⁸ The wide range of persistent symptoms requires a coordinated response from multiple medical specialties. PASC models of care were mostly unavailable until mid-2021. Many primary care providers (PCPs) have been unfamiliar with the presentation and unsure of appropriate treatment options.⁹

Early Collaboration and Academic Model Systems

Formalized models of care systems and multidisciplinary collaborations began in early 2021 as health care providers recognized the needs of the affected population as a new and separate issue. As the primary stakeholders, patient-led collaborations were some of the first to document symptoms and publish reports concerning PASC. These groups also brought advocacy to the forefront for marginalized and underserved populations lacking access to care.¹⁰ The American Academy of Physical Medicine and Rehabilitation (AAPMR) would soon follow with a coordinated call to address this population through the Multi-disciplinary PASC Collaborative in March 2021.¹¹ This group brought together expert health care providers from not only the field of rehabilitation but also in pulmonology, cardiology, neurology, primary care, and patient advocates to continually develop and update clinical guidance, education, and resources in the wake of the ever-expanding knowledge about this newly recognized condition. The Centers for Disease Control (CDC) provided further guidance in June 2021 with a Clinician Outreach and Communication Activity specifically addressing PASC, providing a framework for the evaluation, management, and follow-up of these patients.¹² The initial focus was on the continued care need posthospital and emergency room care, but as the cases increased, the need for community based focus and primary care became readily apparent. Coinciding with the availability of payor-sanctioned telemedicine, the community and primary care model of care for this population began to develop its own framework for evaluation, management, and referrals.¹³ Large academic medical centers with large catchment populations and a variety of clinical settings provided an excellent incubator for an integrative approach to PASC management. Early academic models initially centered on the medical specialties of physiatry (given the chronicity of symptoms and already established paradigms for traumatic brain injury, cardiac and pulmonary rehabilitation), cardiology, pulmonology, neurology, and psychiatry. As PASC became more clearly defined as a multisystem pathology, more specialties were folded into the various academic models of care. Early adopters such as University of Texas Southwestern Medical Center, University of Texas Health Science Center at San Antonio Program, and the Veterans Administration Greater Los Angeles Health Care System provided unique frameworks for their differing PASC patient populations.¹⁴ New York-Presbyterian/Weill Cornell Medical Center established a model which included a 30-bed unit for patients preparing to transition out of the acute phase that was led by a hospital medicine physician and a physiatrist.¹⁵ A similar unit was established at the Los Angeles VA Hospital for patients with active infection but not requiring high-acuity services.¹⁶

Approach

Long Coronavirus Disease Care Models Core Components

Every model of care has core components that form an integral part of such a model, and other disciplines are included on an as-needed basis. Depending on the condition and organ system involved, the lead for such a model may be based in a particular specialty or discipline. For PASC, as the impact is multisystemic, multiple disciplines can potentially serve as leads. A survey conducted by the AAPMR Long COVID Collaborative showed that most clinics were housed in physical medicine and rehabilitation (PM&R) (40%), pulmonology (22%), and internal medicine (16%). The most common specialties considered part of the treatment team were physical therapy, pulmonology, PM&R, neurology, cardiology, psychology, neuropsychology, speech and language pathology, occupational therapy, and psychiatry. Fifty-five percent (55%) of the survey respondents reported that the treatment team consisted of anywhere between 6 and 10 specialties, whereas 31% reported that their team consisted of over 10 specialties.¹⁷ The numbers may be somewhat biased as the survey was carried out by the AAPMR. Of the 94 established PASC clinics, many used telemedicine visits as their standard for the initial intake visit or otherwise provided it as an option.

Role of allied health Professions

PM&R has been in the forefront of the multidisciplinary care models to date, and physical, occupational, and speech/cognitive therapies have played a vital role in these programs.¹⁴ Targets for physical therapy include management of respiratory insufficiencies, gait and balance disorders, poor endurance, and other mobility-related issues. Occupational therapists perform activity analysis addressing the management of fatigue and post-exertional malaise. Speech and cognitive therapists address cognitive and communication deficits when needed.¹⁸ Mental health diagnoses, both new and long-standing, are common, and recognition and treatment involve therapists, counselors, psychiatrists, and psychologists.¹⁹ With the symptoms of PASC including cognitive difficulties often described as “brain fog,” neuropsychological assessments are also used.¹⁷ In addition, the multidisciplinary team works together to identify barriers to return to work, school, or the community as appropriate and provides potential solutions. These can include accommodations at school or work.

Last, patients with PASC often have complex social needs which present challenges to them and their families. Care coordinators, social workers, or case managers can help with patient navigation, resource identification, and patient adherence to treatment plans.²⁰ A number of models included advanced practice providers and nurses to increased patient accessibility.²¹

Application

Primary Care Model

The role of primary care in the management of PASC is vital. Although multidisciplinary models largely exist in academic centers and larger cities, most care for PASC patients is provided by the primary care providers (PCPs). A consensus statement using Delphi method stresses the central role of PCPs.²² At centers where specialist availability is limited, PCPs can use standardized assessment and screening to initially triage, manage, and refer appropriate patients to specialists. A tiered model with self-management, primary care, and the multidisciplinary team as three levels was proposed by the National Health Service (NHS) in accordance with the National Institute for Health and Care Excellence (NICE) guidelines (Fig. 1 ).²³ Many other publications stress the importance of primary care and make recommendations regarding basic symptoms management.^{24 , 25}

Fig. 1.

Tiered pathway of input needs.

(Data from Parkin A, Davison J, Tarrant R, Ross D, Halpin S, Simms A, Salman R, Sivan M. A Multidisciplinary NHS COVID-19 Service to Manage Post-COVID-19 Syndrome in the Community. J Prim Care Community Health. 2021 Jan-Dec;12:21501327211010994. https://doi.org/10.1177/21501327211010994. PMID: 33880955; PMCID: PMC8064663.)

Examining systematic reviews of care models for PASC, a common element in the most proposed models of care is the need for and involvement of primary care into long-term care.^{17 , 26 , 27} Developing a system to integrate primary care into a principal helps to supplement scare specialty long COVID clinics which usually have long waiting lists and barriers to access for patients with geographical and funding challenges.¹⁶ Primary care-centered models offer a sustainable solution to ensuring that patients with PASC receive optimal medical care.

NYC Health Hospitals represent an innovative primary care PASC model. Given the particularly heavy and early disease burden in New York City, New York City (NYC) Health established three COVID-19 Centers of Excellence in the Bronx, Queens, and Brooklyn.²⁸ These centers provided comprehensive primary care services designed to provide longitudinal care for PASC patients. Onsite specialists (mental health professionals, cardiologists, and pulmonologists) and diagnostic equipment (imaging, transthoracic echocardiograms, and pulmonary function testing) are available. These centers provide a structured on-site pathway to subspecialists within NYC Health system.

Hennepin Healthcare System is another example of a primary care-based model system. An interdisciplinary team of PCPs, physiatrist, and therapy services developed assessment tools and treatment/referral algorithms to manage PASC patients. These tools and algorithms were integrated directly into Hennepin’s health care community clinics.²⁶ The tools are modified to have versions for patients who specifically present for PASC symptom evaluation (long version) or for patients who during an unrelated visit report PASC symptoms (short version). Screening results identify possible needs that would be met by a therapy for specialty clinic referral. Patients with multiple system involvement or ongoing deficits limiting their function 4 weeks past their initial COVID infection were referred to the physiatry-led post-COVID recovery Clinic. PCPs can be a great resource to patients for validating their experience, detecting and acting on the “red-flag” symptoms and taking appropriate actions, encouraging self-management, creating realistic goals, and helping patients improve their function (Fig. 2 ).²⁹

Fig. 2.

Long COVID: a guide for primary care.

(Data from Greenhalgh T, Sivam M, Delaney B, Evans R, Milne R. Long covid- an udate for primary care BMJ 2022:e072117 https://doi.org/10.1136/bmj-2033-072117.)

Home Care Models and Telehealth

For some patients with extensive needs, home care models have been developed.³⁰ Although home care for the management of acute COVID-19 illness was readily available, home management models of PASC were not.

Many affected by PASC were not critically ill or hospitalized at the time of infection. Persons living in residential care facilities and private homes have been affected which furthers the need to equip PCPs and long-term residence health care providers in the community setting to recognize the condition and have options for home management.³¹

PASC, to a large degree, has changed the paradigm of home care and self-management. Information, both accurate and inaccurate, has been widely available on the Internet, in Podcasts, and YouTube videos.³² Many medical centers as well as the US Department of Health and Human Services offered information on recognizing symptoms and management of these symptoms.³³ An approach to treatment in this population is empowering the patients to self-manage with oversight and guide their own progress based on the waxing and waning nature of the disorder.

The use of home pulse oximeters, incentive spirometers, and home oxygen are common for management of acute COVID-19, but technology and wearables can also be used for monitoring symptoms and management of PASC.³⁴ One such proposed tool used a digital platform which monitors general health, symptom fluctuations, and potential triggers, and is linked to wearable sensors.³⁵ Data are collected about correlations between heart rate and heart rate variability in symptom burden all while implementing targeted rehabilitation programs. Further, in other chronic illness, home-based programs have been found to be beneficial in improving overall quality of life and functional capacity compared with the groups that did not perform the home program.³⁶

Although telehealth was slowly being tested in the provision of health care in the United States, the pandemic propelled its use past all expectations. The support of the Centers for Medicare and Medicaid Services and other insurers to use telehealth during the peak of the pandemic to reduce exposure to infection has changed the provision of health care.³⁷

Many models and sites use telehealth as an initial visit which can serve as a screening visit and referring patient to appropriate disciplines afterward.²⁷ Telehealth also expands the capacity for follow-up care after discharge from an emergency room or hospitalization. Telehealth serves as a quick and effective tool to check on patients’ post-discharge and assess for medication reconciliation, symptoms, function, and difficulties that patients face after hospital discharge. If a patient with PASC has considerable post-exertional malaise, a model that offers telehealth visits offers respite from a possible crash or relapse that could occur with an in-person visit. A multidisciplinary provider evaluation can also be performed using this platform. In addition, advanced practice providers (physician associates or nurse practitioners) can conduct assessments using treatment algorithms to improve access.³⁸

Salient symptoms of PASC, namely fatigue and post-exertional malaise, particularly support home management as a key element in treatment. This approach improves access to patients in rural areas or with limited transportation. Treatment plans for those with PASC-related fatigue found the most successful ones included elements of peer support, self-managed exercise programs, instructing on focus awareness of triggers and functional limit as well as home-based activities all of which can be implemented remotely.³⁰

Barriers of Care in Long-Term Care Facilities

During the pandemic, it became clear that those living in long-term care facilities were particularly vulnerable to COVID-19 infections with high rates of mortality and morbidity.³¹ Although there are limited data on PASC in this population, one study found a higher incidence of long COVID symptoms in the institutionalized versus those in a home setting.³⁹ Many of those affected in this older cohort of our population have been unable to return to their prior level of function.⁴⁰ Although the need for treatment in this population has been acknowledged, there has been very little investigation and few recommendations for programs that can be initiated in long-term care setting.³⁹

Standardized assessment and minimizing duplication

As PASC involves multiple systems, multiple tests, and investigations unfortunately get ordered. There is also a duplication of such tests, and the care is not standardized. The role of such models of care is vital in minimizing redundancy. Unlike the United States, countries with connected medical records and systems minimize information duplication. The AAPMR PASC Collaborative has released multiple guidance statements which recommend certain investigations and intake questionnaires that should be considered while caring for patients with PASC.⁴¹ Routine testing for every symptom is not recommended as most of the patients are expected to improve with proper education and symptom management, but if red flags are seen, appropriate testing and specialty referral are warranted. Please refer to Fig. 2.

See Table 1 for a summary of care models and their salient features.

Table 1.

Summary of care models and their salient features

Model of Care	Example	Description	Salient Features
Specialty-based model	UTSW	Physiatry lead clinic, referrals from discharge from acute care hospital, community providers, or patient self-referrals	Comprehensive plan of care with easy access to PT/OT/SLP and neuropsychology
	John Hopkins	Physiatry and pulmonary lead clinic, referrals from discharges from acute care hospital after 48 h in ICU	Comprehensive plan of care combined with remote monitoring of vitals for high-risk patients
Primary care-based model	NYC Health	Establishment of primary-based COVID-19 Centers of Excellence	Increased catchment area as well as onsite specialists
	Hennepin	Development of screening algorithm for primary care providers	Evidence-based guideline approach for primary care for indications for referrals. Algorithms can be updated with emerging evidence
Home-based/telehealth model	Home-based exercise therapy	Guided exercises for patients to perform without any equipment aimed at improving endurance, strength, and pulmonary function	Low barrier to entry. Does require patient motivation. Owing to lack of supervision, it would be unclear if patients are doing exercises correctly
	Telehealth services	Initial screening through virtual appointments	Wide reaching access to patients in rural areas and patients without reliable transportation

Abbreviations: OT, Occupational Therapy; PT, Physical Therapy; OT, Occupational Therapy; SLP, Speech Language Pathology; UTSW, University of Texas at Southwestern Medical Center.

Discussion

PASC has been better defined as a separate condition, and there is an increasing need for access to care for those affected in virtually all settings. Currently, the demand far outweighs the supply with patients often waiting months for evaluation and treatment plans. Although the rate of new hospitalization and deaths has diminished, the population of those with PASC continues to increase. It is likely to become endemic in light of the poor uptake of vaccinations in many parts of the country and a lack of tracing. Complicating the picture is the continued viral mutation with acute symptom clusters changing.

Owing to these factors, it seems that PASC surveillance and management will be needed long term, and standardization of these care models is necessary to understand trajectory and intervention efficacy. There continues to be a great need for education of health care personnel.

Currently, there are no predictors of PASC symptom severity and duration. Some find fatigue a limiting factor to exercise and leisure activities, whereas others may be unable to accomplish their daily activities. The inability to return to gainful employment and the unknown trajectory of disease lead to the recognition of PASC as a disability under the Titles II (state and local government) and III (public accommodations) of the Americans with Disabilities Act, 3 Section 504 of the Rehabilitation Act of 1973 (Section 504), 4 and Section 1557 of the Patient Protection and Affordable Care Act (Section 1557).

In the primary care-based model of care section of this article, the authors discussed how health systems have been able to create guidelines and algorithms, allow for PCPs to screen both established patients who had contracted COVID as well as new patients presenting with PASC symptoms or complaints. These algorithms allow for a consensus-based approach to symptom management, specialist referral indications, and therapy indications.

In addition to guidelines, new resources have become available for PCPs and other health care providers to better familiarize themselves with PASC. Examining one example in particular, the University of New Mexico outreach program (formed in conjunction with the CDC) named Project ECHO has been working to increase the accessibility of medical knowledge to combat health care disparities.⁴² This program currently offers self-paced online courses on emerging best practices for management of PASC patients. The program also offers ongoing online monthly didactic presentations specifically related to emerging literature for PASC lead by subject matter experts. The availability and accessibility of this information is a vital tool in the arsenal of PCPs in the face of this growing patient population.

Multiple professional or governmental agencies and organizations have developed guidelines that help with defining the problem, evaluating and management of patients with PASC. The AAPMR has been in the forefront in releasing consensus statements as a part of the PASC collaborative. Guidelines for breathing discomfort, cognitive symptoms, fatigue, cardiovascular symptoms, autonomic dysfunction, and pediatrics have been released with others upcoming. The goal of the collaborative is to foster engagement and share experiences to propel the health system toward defining standards of care for persons experiencing long COVID-19. Other organizations such as the Infectious Society of America, CDC have also been involved in organizing online lectures and educational series and conducting COVID-related research. Other countries including Australia and the United Kingdom have also published guidelines to help providers with management of PASC. There have also been other publications guiding physical activity, exercise, and therapy for post-COVID. The CDC also funds projects such as the Project ECHO, which disseminates information and educates PCPs on managing illnesses like long COVID.⁴²

Summary

The aftermath of the COVID-19 infection, much like the start of the pandemic has prompted health care entities to work diligently to establish and expedite diagnostic modalities and treatment approaches to care. Multiple model care systems have been implemented which include those centered on medical subspecialties such as pulmonology but primarily, a primary care model has been proposed as the most accessible and potentially sustainable long term. Physiatry has been in the forefront of long COVID care incorporating a holistic approach and using its experience with interdisciplinary collaboration. In addition, allied health disciplines often included are respiratory therapy, nursing, physical therapy, occupation therapy, speech therapy, psychology, and social work. Last, with the emergence of telehealth during the pandemic, several care models include home care and virtual visits that facilitate access to care in underserved populations.

Clinics care points

• •Post-acute sequelae of SARS CoV-2 (PASC) surveillance and management will be needed long term, and standardization of these care models is necessary.
• •Primary care providers can screen patients presenting with PASC symptoms and through established algorithms and a consensus-based approach, manage symptoms, include therapy disciplines, and facilitate specialist referrals.
• •Physiatrists, being uniquely skilled at adopting a holistic approach, leading an interdisciplinary team, and collaborating with multiple specialties are well equipped to care for the long COVID population.

Disclosure

The authors have nothing to disclose.