On the heels of election day and in the middle of the third and worst wave of COVID-19 here in the U.S., I found comfort through my computer screen with a community of rheumatologists at the American College of Rheumatology’s (ACR) first virtual annual meeting. To be honest, I had relatively low expectations for myself. Besides a handful of sessions that I was committed to attending, I was fully prepared to table the rest of the meeting for “on-demand” watching over the next several months. My third-grader was home after a COVID-19 exposure in his class and I was anxiously awaiting the election results, ricocheting between panic, despair, and hope.
This year has been a lot. It has been a lot for working mothers like me. It has been a lot for health care workers. It has been a lot for all of us. Especially for Black Americans who have suffered from the “twin pandemics” of racism and COVID-19. The mental distress around this pandemic and everything that 2020 has brought with it cannot be understated. This was apparent in a large body of thoughtful and important work presented at the ACR Convergence that kept me riveted.
Among the narrated posters I wandered through on the subject was Gregory Vitone’s (Hospital for Special Surgery), which described the high rates of stress, depression, and anxiety in rheumatology patients after the Spring surge in New York. This work mirrored much of what we had seen at my own institution in the Bronx, and was depicted in Shereen Mahmood’s (Montefiore Medical Center) poster. Valerie Aloush (Tel Aviv University) presented data about worse mental health and pain in fibromyalgia patients in Israel subsequent to their lockdown and Patricia Katz (University of California San Francisco) presented on the FORWARD cohort, showing that they had worsening anxiety and depression symptoms, correlating to COVID-19-related distress.
None of this is surprising. A recent study conducted by the CDC of adults across the U.S. from March to June indicated that people were experiencing significant trauma and stress-related symptoms, anxiety, and depression. Alarmingly, more than a quarter of young adults surveyed expressed suicidal ideation.
One of the most interesting abstracts on mental health and COVID-19 in rheumatology patients was presented by Sam Lim (Emory School of Medicine) and looked at stress and mental health in the GOAL (Georgians Organized Against Lupus) cohort. Lim and his colleagues found that female and Black people with lupus actually had improved stress and mental health during the early pandemic. This was during a time when national alarms were raised, but notably Georgia was not (yet) as severely impacted as the Northeast. The authors posit that this may be from stress and anxiety being normalized in these specific patient populations; that where once the anxiety and stress related to disease or discrimination was isolating, now it was a common experience. I do not doubt the possibility of this, and it is a devastating condemnation of the social injustice that permeates daily “normal” life for Black people, especially Black women.
Clearly the burden of stress and associated mental health symptoms around both the pandemic and racism require our utmost attention. Christele Felix and Carly Harrison (LupusChat)’s talk “COVID-19, Racism, and Gender Discrimination” was a powerful call to action. Felix discussed how stress likely worsens both mental and physical health. She pointedly called for us to acknowledge and dismantle racism, and to address its consequences by helping to provide resources for the emotional health of our patients.
The truth is that mental health has forever been a major part of the conditions we treat in rheumatology. Attempting to treat the disease while ignoring our patients’ mental health is short-sighted. Leonard Calabrese (Cleveland Clinic) made this point beautifully in his session entitled “The Science of Empathy in Rheumatology: Why We Should Care.” He talks about the dichotomy between the physician and patient perspectives of illness and proposes an approach that incorporates a holistic view of wellness beyond the exam findings and biomarkers we cling to. This theme emerged in Kathleen Kenney-Riley’s (Children’s Hospital at Montefiore) talk, too, on quality of life and functioning in adolescents with lupus. Both presented that a major predictor of divergent patient/provider assessments is unmet psychosocial needs.
Many rheumatologists think we should address mental health. Perhaps, in particular, pediatric rheumatologists, who take care of patients in adolescence, when many mental illnesses first present. Work I was involved in from the Childhood Arthritis and Rheumatology Research Alliance (CARRA) Mental Health Workgroup showed that pediatric rheumatologists overwhelmingly support mental health screening. Corroborating this was a poster from Jacob Spitznagle (Hospital for Special Surgery) showing that more than half of pediatric rheumatology fellows surveyed thought psychosocial assessments or “HEADSS” (home, education, activities, drugs, sexuality, suicide/depression) should be conducted routinely for adolescents in their clinics.
The problem is, we don’t do it. Spitznagle found that only a quarter of pediatric rheumatology fellows reported they annually assessed their patients and despite the widespread support, a small percentage of us routinely and systematically screen.
Osman Bhatty (Allegheny Health Network) had a sobering poster showing that implementing plans for depression screening is not enough. He looked at patient records after a policy for universal screening was instituted in rheumatology clinics and saw that many patients continued to go unscreened. Worse, many positive screens went unaddressed.
Clearly, there is work to be done. This has motivated a new task force from the CARRA Mental Health Workgroup to develop guidance on screening and addressing mental health for pediatric rheumatology patients. Hopefully this bridges one major barrier: specific guidance and education on an approach to mental health for pediatric rheumatologists. It is past time for us to meaningfully tackle this problem. The pandemic has only made the work ever more urgent.