Long COVID: The Pandemic’s Undocumented Long-Term Sequelae

      Amidst a dearth of research on long COVID in post-acute and long-term care (PALTC), leaders and clinicians in the field have been taking note of worsening or new heart and lung problems, accelerated frailty and functional decline, prolonged delirium, unusual skin manifestations, and other symptoms and changes in individuals in skilled nursing facilities after SARS-CoV-2 infection.
      Diane Sanders-Cepeda, DO, CMD, senior medical director for UnitedHealthcare (UHC) Retiree Solutions and a member of the AMDA – The Society for Post-Acute and Long-Term Care Medicine Board of Directors, is one of these leaders. Early in the pandemic, she noticed that patients and residents who survived COVID-19 were “not rehabbing as expected” and were not faring as well as would be expected after other acute illnesses.
      Dr. Sanders-Cepeda began tracking published research about long COVID, social media discussions, and the experiences of her UHC members — and then speaking at state-level Society meetings and other forums about the importance of understanding post-acute sequelae of COVID (PASC), her favored term used to describe post-COVID conditions seen in PALTC.
      “We need to have a high level of suspicion that post-acute sequelae of COVID can be occurring in our population; we need to be documenting it, and we need to be coding what we’re seeing as well as using the post-COVID [ICD-10] condition code,” she told Caring.
      Such attention is important, she says, for driving anticipatory care planning and conversations with families, collaborating with other care team members, pushing for coverage from payors of needed care, and advocating for future research.
      Ultimately, Dr. Sanders-Cepeda says, teams need management guidance that offers “steps for looking at this condition and for being proactive in our engagement of individuals who may have this condition.”

      Early Assessments After COVID

      A few published studies have quantified the risk of PASC or long COVID in mainly community-based people aged 65 and older. A Centers for Disease Control and Prevention study of electronic medical records for almost 2 million people with a COVID-19 diagnosis in the first 18 months of the pandemic found that 45.4% of those aged 65 and older had one or more of 26 conditions often attributable to post-COVID, compared with 19% of uninfected individuals. This translates to one in four older survivors having potential post-COVID conditions. (One in five of younger patients experienced such incident conditions.)
      “Implementation of COVID-19 prevention strategies as well as routine assessment for post-COVID conditions among persons who survive COVID-19 is critical to reducing the incidence and impact of post-COVID, particularly among adults aged ≥65 years,” wrote Lara Bull-Otterson, PhD, and colleagues in the May 27, 2022, issue of the CDC’s Morbidity and Mortality Weekly Report (2022;71:713–717).
      Investigators of a retrospective cohort study of almost 90,000 adults aged 65 and older, published in the British Medical Journal in February 2022, reported that 32% sought medical attention up to four months after infection for one or more new or persistent clinical sequelae — 11% higher than a comparison group without a history of COVID-19 (BMJ 2022;376:e068414).
      The study also found that when these patients were matched with a historical comparison group with viral lower respiratory tract illness, only three sequelae — respiratory failure, dementia, and post-viral fatigue — had increased risk differences.
      Dr. Sanders-Cepeda said her experience does not at all echo this second finding of the BMJ study, but she shares the data and praises the CDC’s recommendation for routine assessment after COVID infection.
      “We should be at the point where [skilled nursing facility] teams are proactively looking for [post-COVID] symptoms,” she said. “We need early assessments, and they need to be interdisciplinary. The pharmacists, the nurses on the floor, the nursing administration, and the physical and occupational therapists — we need them all at the table ... And our health systems need to understand that [SARS-CoV-2] is something different.”
      Dr. Sanders-Cepeda advises using the ICD-10 code U09.9 for Post COVID-19 Condition, Unspecific, whenever residents/patients “have any symptoms consistent with the World Health Organization’s [WHO] definition of PASC.” WHO defines a “post-COVID condition” as one that occurs in individuals “with a history of probable or confirmed infection, usually 3 months from the onset of COVID-19, with symptoms that last for at least 2 months and cannot be explained by an alternative diagnosis.” One should bill first for the conditions seen, such as fatigue, then use the new code, she said. (The code became effective in October 2021.)
      For Ozioma Erondu, DNP, CRNP, AGNP-C, who specializes in PALTC, more frequent visits and closer monitoring, with more frequent laboratory tests that include a look at electrolytes and albumin, have become routine after COVID-19.
      Her experiential picture of long COVID in nursing homes has been one of “worsening, decompensated lungs,” suboptimal oxygen saturation, dementia that progresses more rapidly than in those without a history of COVID-19, chronically poor appetite and weight loss, worsening heart problems, and a more rapid progression of cognitive decline in those without previously diagnosed dementia.
      Months out from COVID-19, “we’re seeing more dyspnea on exertion, and those [without a history] of murmurs now having murmurs,” said Dr. Erondu, who works for Personal Physicians Care in Columbia, MD, and until recently worked with Personalized Health Partners. “Also more wheezing and coughing, shortness of breath ... and [persistent] pleural effusion without cough in patients who never had asthma, never smoked or had a diagnosis of chronic obstructive pulmonary disease.” Anecdotally, clotting issues and deep vein thrombosis, which she saw with the delta variant, have not been significant issues more recently, she noted.
      Regarding management, Dr. Erondu notes, “in [residents] who are [approaching] cachexia, we are treating immediately, with more use of medications and more nutritional supplements.”
      At Johns Hopkins Bayview Medical Center in Baltimore, the post-COVID approach is “what the approach should be for any significant condition, which is following up on how the illness has impacted the functional status, cognitive status, and quality of life” of the individual, said Michele Bellantoni, MD, CMD, the center’s associate director of PALTC. “Good geriatric care serves us well,” she said.
      In her population, the worsening of heart failure, emphysema, and other chronic conditions — worsening that “might not have occurred otherwise” — is the main challenge. “The chronic conditions become more difficult to manage,” she said.

      Rehabilitation Needs

      Research underway in Canada is expected to document how long COVID “presents differently” in long-term care than it does in younger populations in the community, said Akber Mithani, MD, regional medical director of long-term care/assisted living for the Fraser Health Authority in Surrey, BC.
      Dr. Mithani is the principal investigator of a multipronged retrospective cohort study there on long-term sequelae of COVID-19 in long-term care residents. The Fraser Health Authority has more than 9,800 long-term care beds.
      In a letter to the editor published in May 2022 in the Journal of the American Geriatrics Society, Dr. Mithani and colleagues appealed to the research community to “rapidly address the dearth of research about long COVID among residents in LTC homes” in order to inform guidelines for long COVID management [May 14, 2022,]. “COVID-19 survivors in LTC have been found to have poorer outcomes related to malnutrition, weight loss, and frailty compared to the non-infected,” they wrote.
      And in an interview in June, Dr. Mithani, who is also on the faculty of the University of British Columbia’s Department of Psychiatry, said that across the Fraser system, he has seen “a huge amount of functional deterioration” in the months after COVID infection, rapid trajectories of dementia — “almost as if COVID has acted as a catalyst” — and depressive symptoms that are not fully attributable to isolation.
      Thus far, there appear to be two categories of LTC residents with long COVID, he said: Those who are “deteriorating functionally and/or cognitively at a much faster rate than one would expect otherwise” — and for whom a palliative approach becomes key to management — and those for whom there is potential for rehabilitation. What sets individuals down one path or the other is one of the questions he hopes to answer through the cohort study. The study will compare symptom profiles, course of illness, and care of COVID-19 survivors with or without long COVID.
      Dr. Sanders-Cepeda, whose role at UHC Retiree Solutions includes designing and developing clinical programs that span the geriatric continuum (home, hospital, skilled nursing facility, etc.), said that PASC often necessitates a “longer runway” for rehabilitation. “Payors need to understand you may not have a simple two-week rehab,” she said. Clinicians “need to anticipate this and write it into the care plan.”
      (UHC Retiree Solutions designs and administers employer group–sponsored Medicare Advantage plans. Dr. Sanders-Cepeda notes that she has been pushing for the collection of more data on medication utilization patterns, worsening of conditions, rehospitalization, and more.)
      She believes that physical and occupational therapists are ahead of the curve in documenting post-COVID conditions and rehabilitation challenges. They’re “doing more anticipatory thinking,” she noted, about what services may be needed in the context of acute, post-acute, and long-term symptoms of COVID-19, given that the infection can affect multiple organ systems.
      At Johns Hopkins Bayview Medical Center, an inpatient Cognitive Behavioral Consult Service developed before the pandemic to manage delirium in patients with baseline dementia is proving useful in the wake of COVID-19. One of its hallmarks — the inclusion of recreational therapists in delirium management plans and protocols, which extend after hospitalization into PALTC — is filling the need for longer-term therapy for COVID-19 patients with baseline dementia who develop delirium, said Dr. Bellantoni, who is also an associate professor of medicine at the Johns Hopkins University School of Medicine.
      “What we’re seeing in patients with baseline dementia is that delirium is prolonged and may not clear,” Dr. Bellantoni said. “We need an ongoing plan for physical recovery and cognitive recovery, and we look to our recreational therapists.” Into recovery, “once you take the patient over the hump,” some activities recommended by the recreational therapist can be implemented by sitters and family members, noted Shaista Ahmed, MBBS, MPH, assistant professor of medicine at Johns Hopkins University, who directs the service.

      COVID-19 and Skin

      COVID-19 skin manifestations may mimic deep tissue pressure injuries (DTPI) and should be considered in the differential diagnosis, said Vycki Nalls, PhD, GNP-BC, CWS, ACHPN, a certified wound specialist based in McLean, VA, who has been networking and educating about new skin presentations during the pandemic.
      “On first glance they look very similar,” she said. “But on close examination you can tell that the COVID skin manifestation, over the sacrum (for instance), has a more diffuse and superficial look to it, even though it’s a purple red, whereas the deep tissue injury really has the dark deep red and is more localized over a bony prominence.”
      The National Pressure Injury Advisory Panel ( issued a white paper early in the pandemic detailing cases and advising providers to label skin lesions not consistent with DTPI as potential skin manifestations from COVID-19. And Dr. Nalls and wound specialist Pamela Scarborough, PT, DPT, CWS, vice president of clinical affairs at American Medica Technologies, are among those who have been trying to get the word out in PALTC.
      Another of their messages is to carefully document wounds because some of them may be unavoidable, stemming from the sometimes critical nature of COVID-19 and potentially from PASC. COVID skin damage likely involves coagulopathy or microvascular occlusions, which in turn can leave underlying soft tissue less tolerant of pressure, shear, and stress.
      Hypoxia may also affect the skin, presenting DTPI risks that may not be possible to overcome with reasonable pressure injury prevention. “A big question is, how will the long sequelae of COVID, if there are coagulopathy issues or [persistent] hypoxia issues, impact wound healing?” said Dr. Nalls, who has provided hospice care during the pandemic and is now the director of clinical training and development for Aledade Care Solutions, which supports primary care practices.
      Asking about COVID, the severity and length of symptoms, the finding of hypoxia, and weight loss are among the data that should be collected to help determine etiology of a wound, she said.

      Eyes on Broader Research

      “There’s no workable and widely accepted definition,” said Steven Deeks, MD, a professor of medicine at the University of California–San Francisco, in a RECOVER (Researching COVID to Enhance Recovery) review seminar held by the National Institutes of Health (NIH) in March (see or
      With PASC overall, differentiating which symptoms are long COVID–related and which are related to multimorbidities or anticipated declines after acute illnesses can be challenging. As Dr. Mithani and colleagues wrote, there are “intersecting mechanisms of advanced aging, pre-existing conditions, and long COVID.”
      There’s also a lack of consensus on the definition of long COVID and its onset, duration, and symptoms. The CDC speaks of both “long COVID or post-COVID conditions” on its website and uses an onset of ≥4 weeks (compared with 3 months by WHO) in describing the long-term effects of SARS-CoV-2 infection.
      Dr. Deeks is one of more than 100 researchers leading studies through the NIH RECOVER initiative looking at “PASC and Long COVID.” Although RECOVER has no age cutoffs, its adult studies have enrolled mainly people younger than 65.
      In an email interview with Caring, Dr. Deeks said that the long-term impact of COVID-19 includes but is not limited to what’s broadly been coined “long COVID.” It is already known that after COVID people are at higher risk for many comorbidities associated with aging, including cardiovascular disease and diabetes, he said.
      And nearly 20 years of research on the impact of human immunodeficiency virus (HIV) on aging has shown, he notes, that virus-associated chronic inflammation can cause “accelerated aging” — a “vague concept characterized by excess risk of a number of age-associated diseases,” especially cancer and cardiovascular disease, but also frailty and other geriatric syndromes.
      Like HIV, COVID’s long-term impacts appear to be associated with chronic inflammation and immune dysfunction, so “I suspect that the very old who have less resilience will be at high risk of frailty and all the geriatric syndromes,” Dr. Deeks said. “Research on this topic is very much needed.”
      The epidemiology and natural history of PASC are poorly understood, Dr. Deeks said in the RECOVER seminar. More research is also needed on the biologic predictors and mechanisms for PASC (and other postinfectious syndromes), but “many targetable pathways have been identified,” he said.
      And importantly, he said that early data have “started to suggest that vaccination is helpful” in preventing PASC.
      In PALTC, prevention is on Dr. Mithani’s longer-term research agenda. “Do the therapeutics we have available right now have any impact on long COVID? Have the people who have potential for rehabilitation received some level of treatment? In this population, and in any population, actually, we don’t have any idea.”
      Figure thumbnail fx1
      Frailty, cognitive decline, heart and lung issues, and unusual skin manifestations are all linked to what has been called long COVID in older adults.
      Christine Kilgore is a freelance writer based in Falls Church, VA.

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