Treating Long COVID: BIDMC Physician-Scientists Contribute to First-of-its-Kind Published Clinical Guidance

AAPM&R Long COVID consensus guidance statements published on diagnosing and treating Long COVID symptoms of breathing discomfort and cognitive symptoms

BOSTON – An estimated three to thirteen million Americans have Long COVID, defined as new symptoms or health impairments from COVID-19 that persist after recovery from acute illness. Based on data from the Journal of the American Medical Association (JAMA) and a database compiled by the American Academy of Physical Medicine and Rehabilitation (AAPM&R), the symptoms of Long COVID – also termed Post-Acute Sequelae of SARS-CoV-2 infection, or PASC – are varied, may last months to years beyond infection, and include neurological and cognitive symptoms, respiratory issues, fatigue, pain and mobility issues, among many other impairments.

Now, the AAPM&R has released two consensus statements with practical guidance for clinicians treating patients suffering from breathing discomfort or cognitive symptoms, two of the most common symptoms of Long COVID. Developed by AAPM&R’s Multi-Disciplinary PASC Collaborative – a team of clinical experts including physician-scientists from Beth Israel Deaconess Medical Center (BIDMC) – the clinical guidance is the first of its kind and is published as a peer-reviewed manuscript in the PM&R Journal.

“Despite the emerging data on longevity of symptoms, very limited guidance exists regarding the assessment and treatment of Long COVID,” said clinical lead author Jason H. Maley MD, director of the Critical Illness and COVID-19 Survivorship Program at BIDMC. Maley co-chaired the AAPM&R collaborative on the management of breathing symptoms and lung disease. “Our group was convened to address the pressing need to guide clinicians in the key aspects of caring for patients with Long COVID, and these documents specifically addresses the assessment and treatment of breathing discomfort, respiratory symptoms and cognitive symptoms.”

“We have found that respiratory symptoms are among the most common symptoms reported by patients with Long COVID, including shortness of breath, impaired exercise tolerance, cough and chest pain,” said co-author Joseph D Zibrak, a pulmonologist at BIDMC and assistant professor of medicine at Harvard Medical School. “The severity of Long COVID related lung diseases appear to be associated with the patient’s acute COVID-19 illness, though shortness of breath and breathing discomfort may continue to affect patients who presented with an initially mild case of COVID-19.”

Of note, lung disease can be overlooked in some groups due to issues of inequity and bias. For example, clinicians need to be aware that patients with darker skin pigmentation may have inaccurate pulse oximetry readings that are falsely reassuring, despite experiencing truly low oxygen levels. Additionally, access to specialized testing may be limited in many areas of the country and worldwide, therefore the documents also focus on issues of equity when it comes to caring for patients in any health care setting.

Programs to rehabilitate breathing issues are tailored to the individual patient’s needs and accompanying symptoms. These may include guided breathing therapy, oxygen management, energy conservation and pacing, physical rehabilitation, medication management, nutritional guidance, emotional support and education. Inhaled therapies and oral glucocorticoids used to treat chronic breathing issues like asthma unfortunately do not often improve breathing symptoms of Long COVID, though can be considered when testing suggests that they may be beneficial, or patients are closely monitored for improvement and/or side effects. Rehabilitation for Long COVID cognitive symptoms follows established techniques used for patients with concussion or traumatic brain injury.

Maley and colleagues suggest that partnering with and supporting patients with Long COVID and getting them appropriate care as soon as possible may be the most important course of action.

“Based on patient feedback during our consensus process, we felt that earlier evaluation, diagnosis and management can improve access to beneficial interventions,” said Maley, also an instructor in medicine at Harvard Medical School. “For the purposes of this guidance statement, we recommend expanded assessment if symptoms are not improving one month after acute symptom onset.”

Since the beginning of 2021, Maley and colleagues have undertaken comprehensive efforts to determine best practices for the treatment of Long COVID and the millions of Americans it affects. The AAPM&R PASC Collaborative released its first consensus guidance on fatigue in August, which Maley was also involved in. Additional consensus guidance statements on cardiovascular complications, autonomic disorders, mental health, pediatrics and neurology will be published on a rolling basis.

Co-authors included Joseph D. Zibrak, MD, of BIDMC; George A. Alba MD, of Massachusetts General Hospital; John T. Barry PT, DPT, of Good Shepherd Penn Partners, Penn Therapy & Fitness; Matthew N. Bartels, MD, MPH, of Montefiore Health System, Albert Einstein College of Medicine; Talya K. Fleming, MD, of JFK Johnson Rehabilitation Institute at Hackensack Meridian Health; Christina V. Oleson, MD, of The MetroHealth System, Case Western Reserve University; Leslie Rydberg, MD, of Northwestern University Feinberg School of Medicine; corresponding author Sarah Sampsel, MPH, of SLSampsel Consulting, LLC; Julie K. Silver, MD, of Spaulding Rehabilitation Hospital; Sabrina Sipes, PT, DPT, of UT Southwestern Medical Center; Monica Verduzco Gutierrez, MD, of UT Health San Antonio; Jamie Wood, PhD, of Icahn School of Medicine at Mount Sinai; and Jonathan Whiteson, MD, of NYU Langone Health.

Alba has a patent pending for a novel antibody, unrelated to the present work, and owns stock, Vertex Pharmaceuticals. Bartels reports grants from NIH and AposTherapy, unrelated to the present work. Bartels is a consultant to EHE Medical, LIH Medical, Neofect Corporation. Sampsel is a consultant paid by AAPM&R for writing and project management. Wood is a non-financial advisor to Statis, a company mentioned in the manuscript as an option for breathwork training.