Q&A: Patients with long COVID 'want to be heard'

A recent report found that about 18% of people with long COVID have been unable to return to work since their diagnosis, but primary care physicians can help patients manage the condition, an expert said.

The report, released by the New York State Insurance Fund, analyzed more than 3,000 worker compensation claims related to COVID-19 between Jan. 1, 2020, and March 31, 2022.

The report noted that 31% of claimants either currently have or previously had long COVID, but the percentage fell “sharply over time” and was inversely correlated with higher vaccination rates.

Of those with long COVID, 18% have not been able to return to work for more than 1 year. Most claimants in this group were aged younger than 60 years.

Those with long COVID who were aged older than 60 years, though, faced “significant difficulty returning to regular work life, with their challenges intensifying with age,” according to the report.

The report also showed that:

• almost every claimant who was hospitalized for their initial SARS-CoV-2 infection or had comorbidities also had long COVID;
• of those with long COVID, 40% returned to work within 60 days of infection while still receiving medical treatment; and
• the percentage of long COVID rates among male workers was 11% lower than female workers — 26% vs. 37%.

“The findings feature a condition affecting millions of Americans, potentially stigmatizing them in their personal and professional lives, causing mental health issues, and subjecting them to skepticism and medical uncertainty, including for eligibility for Social Security Disability Insurance,” according to the report.

Jonathan B. Shammash, MD, medical director of Hackensack Meridian Health’s COVID-19 Recovery Center in New Jersey, spoke with Healio about the report, how PCPs can diagnose and manage patients with long COVID and more.

Healio: What are your thoughts on the findings of the report? Is this similar to what you are seeing at your facility?

Shammash: At Hackensack Meridian Health’s COVID Recovery Center, we are seeing a similar rate of long COVID patients unable to return to work. Our data show that 17% of long COVID patients who were working before having COVID have been unable to return to the workforce.

We have seen 381 patients since August of 2021 in our Post-COVID Center, and we have a database in which we gather clinical and demographic information on our patients. We have 174 entries in our database (46% of our total population), and 155 have completed the baseline survey (40% of the total). Of the 155 responses, 123 patients worked before COVID (79.4%), and 32 did not (20.6%). At the time of the survey (post-COVID), there were 96 who worked (61.9%) and 59 who did not (38.1%). Therefore, our data show that about 17% of our patients who were working before COVID have not returned to work.

Healio: What is the process for diagnosing patients with long COVID?

Shammash: We have defined “long COVID” or PASC (post-acute sequelae of COVID-19) as patients having persistent symptoms more than 2 months after their acute infection. We recognize that patients in the first wave of the pandemic may have had infection and not had formal testing to confirm the diagnosis. Long COVID patients have a wide range of symptoms but the most common reasons for seeking treatment at the Recovery Center include brain fog, fatigue and shortness of breath, especially with exertion.

We also see that patients’ symptoms may have developed or worsened after a second or third infection, or after receiving a COVID vaccine in addition to a prior infection. These different presentations reflect how the definition of long COVID has changed over the course of the 3 years since the start of the pandemic.

Healio: How should PCPs manage patients with the condition?

Shammash: Primary care physicians should take a detailed and thorough history as to their patients’ symptoms, and to their timeline of improvements and/or downturns. Many patients have sought care from a number of clinicians and specialists, and it is important to gather as much primary source information in order to avoid duplication of further consultations, tests or treatments. Clinicians should carefully assess their patients’ functional status, including their abilities to perform simple and more complex activities of daily living, and whether patients are able to work and/or carry out their other pre-COVID responsibilities. PCPs should focus on which symptoms are most limiting to their patients and try to address these issues first. Symptoms like brain fog and exhaustion are hard to describe but can truly be debilitating for some long COVID patients.

Healio: What are the biggest lessons you have learned about long COVID since the recovery center opened?

Shammash: Patients want to be heard. They understand that long COVID is not a well-understood condition, and that few, if any, evidence-based, effective treatments have been found. They are struggling, though, physically and financially, and do not want to be dismissed as anxious or depressed. Many are not able to work, yet their clinicians may no longer be willing to categorize them as disabled or unable to return to work in the absence of objective test results. It is important for us to listen to them carefully, and to assess what they can and cannot do to the best of our ability. We then need to determine how we may best support them. We understand that restorative sleep is essential for our patients, and that exercise and activity must be tailored to patients’ current situation — more activity or exercise is usually not better, and over-exertion often leads to a period of fatigue and/or a flare in their symptoms.

Healio: Is there anything else you’d like to add?

Shammash: We have been reviewing the literature to identify potential treatments, especially to reduce possible inflammation in the nervous system after COVID 19 infection. We try to deter patients from proceeding with or continuing treatments which have not been studied and/or have been found to be of no utility, or potentially harmful.

Reference:

• NYSIF report. https://ww3.nysif.com/en/FooterPages/Column1/AboutNYSIF/NYSIF_News/2023/20230124LongCovid. Published Jan. 24, 2023. Accessed Feb. 10, 2023.