Communication between mental health professionals and primary care providers (PCPs) is key to proper diagnosis and treatment of Long COVID mental health issues.
Because Long COVID is a broad condition, providers must collect a full patient history to address other potential causes of symptoms, noted Molly Sanborn, public health analyst at the Substance Abuse and Mental Health Services Administration (SAMHSA). This makes multidisciplinary care vital.
“PCPs are the first link many people have to the healthcare systems,” said Sanborn. “There needs to be clear and comprehensive guidance for PCPs to help them identify individuals with behavioral health symptoms of Long COVID.”
The U.S. Department of Health and Human Services (HHS) estimates that more than 200 physical and mental health symptoms are related to Long COVID, which affects between 7.7 million to 23 million Americans.
Thorough evaluation of a patient’s trajectory with COVID-19 and their personal experiences is important, said Dr. Renee Madathil, Ph.D, an outpatient rehabilitation neuropsychologist at the University of Rochester Medical Center.
This evaluation includes knowing whether someone was able to recuperate at home or whether they needed to be hospitalized, as well as the medical complexities that occurred at the initial onset of illness.
“It really does change what and how you are targeting. The pandemic may have ended but many people came out of the hospital with chronic pain, cardiac issues, and weakened immune systems,” Madathil said. “We need to take into account what other health conditions they are dealing with and consider the importance of multidisciplinary collaboration.”
Who is most at risk
At the onset of the pandemic, some groups — such as certain racial and ethnic minorities, people with limited access to healthcare, the LBGTQIA community, and individuals with pre-existing mental health conditions —bore the brunt of the initial COVID-19 infections, noted Sanborn. This places them more at risk of getting Long COVID.
Melissa Houser, M.D., founder of All Brains Belong, a Montpelier, VT-based practice specializing in treating neurodiverse patients, said some studies show that neurodivergence can also be a risk factor.
“Long COVID has a wide range of symptoms, all of which speak to both mental and physical health, such as headaches, brain fog, fatigue, digestive symptoms, pain, respiratory issues, and more,” Houser said. “It is helpful to not distinguish between physical and mental health symptoms. Everything is connected.”
There is no specific blood or imaging test for Long COVID, Houser noted. The majority of people with long COVID may undergo tests for symptoms and get normal test results, which can be frustrating. “But we are talking with a whole-body syndrome that has no apparent pattern of test findings – [normal] results don’t mean you don’t have Long COVID.”
While there is not a lot of research yet on the mental health implications of Long COVID, for all populations in general, anxiety, depression, disrupted sleep cycles, and lingering cognitive symptoms are the most common mental health symptoms patients experience, said Madathil.
In patients that endured intensive care stays, she has seen stress, lingering delirium, and other post-traumatic stress disorder symptoms (PTSD).
“This is not uncommon and is related to the environmental factors and mental intervention that happens in those settings, such as ventilation,” said Madathil.
The challenges of diagnosis
Determining what mental health disorders are specifically related to Long COVID can be tricky and requires analysis of when symptoms started and their duration, progression, and consistency.
“In some cases it is difficult to separate what is related to the COVID-19 experience versus what is related to ongoing stresses in that person’s life,” Madathil explained. “COVID took its toll on all of us in a number of ways — [we need to consider] not just having the illness itself, but its impact on our own personal and professional lives.”
Sanborn agreed. “It can be difficult to attribute someone’s depression and anxiety to the virus itself, as opposed to other underlying conditions or the long-term effects of the pandemic such as social disruptions or grief.”
There is some correlation of being more prone to mental health symptoms from Long COVID for those with a previous history of depression or other psychological concerns. But that doesn’t cover everyone suffering from Long COVID, said Madathil.
It is important to consider any potential neurological contributors to create a targeted symptom management approach.
“For example, if someone was hospitalized for a long time and experienced ventilation and delirium, we need to think about encephalopathy and the subsequent of any inflammation related to that experience,” she said. “For those who were not hospitalized, we also have to consider that COVID-19 is a virus that affects multiple parts of the body, so we can’t rule it out as a neurologic contributor.”
A crude comparison is post-concussive syndrome, Madathil explained. “We know there was an episode or event that created a disruption in neurological functioning. The episode ended, and the symptoms continued to linger, so we need to take a symptom management approach.”
Appropriate treatments depend on symptom presentation, she said. Many individuals who have complications related to COVID are still dealing with sleep issues, so cognitive behavioral therapy for insomnia (CBTI) can be helpful.
Pain interventions for those with approaches for ongoing neuropathy and pain disorders from their hospitalization can also provide relief.
In July, the HHS announced the formation of an office to coordinate Long COVID research and clinical trials through the RECOVER Initiative, a $11.5 billion nationwide research program to understand, treat, and prevent Long COVID.
“As a society, we need to shift the way we are approaching the COVID conversation,” said Houser. “As a physician, it is terrifying to see how the risks of COVID are being minimized. Some people say ‘COVID is just like the flu, but for many people it is disabling.”