The U.S. Centers for Disease Control and Prevention's long-awaited guidance on evaluation and care of patients with long COVID is out, and if you were expecting the single definitive take on the assessment and management of the myriad post-COVID-19 conditions affecting patients who are recovering from the disease, you may be disappointed. While the resource does offer expert takes on several facets of evaluation and care for patients with long COVID, CDC is also candid in acknowledging that we simply don't know enough yet. The resource itself is described as "interim guidance."
"It has been challenging to create a single universal case definition for post-COVID conditions because studies differ (in their focus, scope, and condition assessments)," write authors of the guidance, adding elsewhere that "Understanding of post-COVID conditions remains incomplete and guidance for health care professionals will likely change over time as the evidence evolves."
Integration With the Physical Therapy Perspective?
Despite the need for more research and the all-over-the-place nature of health conditions experienced by patients with long COVID-19, CDC was able to develop a set of basic guidelines shaped by the perspectives of providers who had experience working with those patients as well as input from medical organizations and patient advocacy groups — but no physical therapists.
Even with that disconnect, there's a significant amount of alignment between the CDC guidelines and COVID-19 core outcome measures developed by an APTA cross-academy task force in 2020, says Heidi Kosakowski, PT, DPT, PhD, APTA senior practice specialist.
"The physical therapy profession had the forethought to create a set of core outcome measures to be implemented across the continuum of care as patients manage the acute stage and the post- acute sequealae of COVID-19," Kosakowski said. "Much of the CDC guidance shows us that we were on target in that work a year before this resource was published."
Rebecca Martin, PT, DPT PhD, chair of the task force that developed the outcome measures, says that CDC's guidance varies somewhat from the physical therapy group's recommendations, but the similarities outweigh the differences.
"I was excited to see that the CDC recommendations aligned so well with our task force’s recommendations," Martin said. "When I compared them side by side, I noticed that they recommended the same two health-related quality-of life measures: the two-minute step test that we recommended for endurance, and measurement of gait speed." The most notable differences, according to Martin, involved cognitive testing — while the task force considered the tests included in the CDC guidance, the group ultimately ruled them out due to cost.
CDC Guidance on Assessments: Beyond Labs and Images
While the guidance includes overarching points that acknowledge the "wide range of physical and mental health consequences" experienced by many COVID-19 patients and asserts that primary care providers should be able to oversee the management of long COVID, the resource also takes a deeper dive into patient assessment and recommended tests and measures.
CDC makes it clear that "objective laboratory or imaging findings should not be used as the only measure or assessment of a patient's well-being," and offers a list of suggested tests and measures that can help providers get a more complete view of the patient's status. Among the recommended tools most relevant to PTs:
Functional status, quality of life: Patient-Reported Outcomes Measurement Information System, Post-Covid-19 Functional Status Scale, EuroQol-5D.
Exercise capacity: one-minute sit-to-stand test, two-minute step test, 10-meter walk test, six-minute walk test.
Balance and fall risk: BERG Balance Scale, Tinetti Gail and Balance Assessment Tool.
Other functional assessments: Tilt-table testing, orthostatic HR assessment.
CDC also recommends the Wood Mental Fatigue Inventory, the Fatigue Severity Scale, the Insomnia Severity Index, and the Connective Tissue Disease Screening Questionnaire for the evaluation of "other conditions."
The guidance also advises providers to use caution when evaluating exercise capacity, particularly when long COVID patients are experiencing postexertional malaise.
"For these patients and others who may not have the stamina for extended or lengthy assessments, modifications in the testing plan may also be needed," CDC writes. "Exercise capacity tests should be scheduled for a dedicated follow-up appointment so that patients can prepare additional home supports."
Management: It's About Patient Support and Dialogue
The CDC guidance also emphasizes the importance of understanding the patient experience of being in relatively uncharted treatment waters while struggling with function and quality-of-life issues. The key, according to CDC, is to listen to the patient and work toward realistic goals that may need to be reconsidered along the way.
"Health care professionals and patients should continue to discuss progress and challenges and reassess goals as needed," the guidance states. "Symptoms not explained by, or out of proportion to, objective findings are not uncommon after COVID-19 and should not be dismissed even if there is not yet a full understanding of their etiology or their expected duration."
The guidance also recommends approaches that include "recognizing and validating the impact of illness on quality of life" and attention to the fact that patients from racial and ethnic minority populations have been more severely impacted by COVID-19 "in part because of structural racism and longstanding disparities in social determinants of health."
As for the types of management approaches to use, CDC writes that "creating a comprehensive rehabilitation plan may be helpful for some patients and might include physical and occupational therapy, speech and language therapy, vocational therapy, and neurologic rehabilitation for cognitive symptoms."
Martin says CDC's management guidelines fall squarely in line with PT practice.
"Physical therapists, with their strong background in clinical decision making, are perfectly positioned to do exactly what the CDC guidance describes — individualize patient care and adapt the plan of care to safely include interventions that minimize postexertion symptom exacerbation or the effects of autonomic dysfunctions," Martin said. "Our plans of care are about so much more than exercise — we're often talking about daily life modifications, especially with these populations."
What's Ahead: Sorting Out Health Effects, Being Open to Evolving Guidance
According to CDC, guidance on long COVID will likely evolve as more research is done that separates the health effects of long COVID from the effects of hospitalization and the treatments used during acute COVID-19. "Health care professionals and patients should continue to check for updates on evolving guidance for post-COVID-19 conditions," the guidance states.
APTA's Coronavirus Resources for the Physical Therapy Profession webpage is continuously updated with current coronavirus news, as well as links to courses, events, and resources, including the COVID-19 core outcome measures for physical therapy. For consumers, choosept.com features a Physical Therapy Health Center on COVID-19.