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Executive Vice President and Chief Medical Officer, CLL Society
Retired Clinical Professor
Department of Family Medicine
Keck School of Medicine, USC Family Practice
Retired Family Physician
St. Jude Heritage Medical Group
Diamond Bar, California
As a physician and survivor of chronic lymphocytic leukemia (CLL) who speaks with many patients with CLL, below I share insights on the patient’s experience in the ongoing COVID-19 pandemic, along with recommendations on counseling and educating patients with CLL on how best to protect their physical and mental health.
Physical and Mental Health Effects of COVID-19 Pandemic on Patients With CLL
Unfortunately, patients with CLL are at higher risk for a serious course of illness and complications related to COVID-19. A recent study by Mato and colleagues published in Blood reported that among patients with CLL who were diagnosed with symptomatic COVID-19, 90% required hospitalization and approximately one third of these hospitalized patients died. These high mortality rates reflect how patients with CLL—even those early in their disease course and/or who have not received treatment—suffer from impaired immunity, which allows SARS-CoV-2 to replicate unchecked.
The pandemic has had a major effect on the behavior and psychology of patients with CLL because we are among the most vulnerable to serious consequences if we are infected. This pandemic means that we have to avoid any risks, which means radically changing our lifestyle. For some patients with CLL, that involves sheltering in place; for others who must go out, it necessitates following strict social distancing, mask wearing, hand hygiene, and all other safety precautions. The psychological burden cannot be underestimated: Patients are home alone and avoiding social and physical contact with others—even close friends and family who do not live in the same home. I am seeing tremendous loneliness, boredom, frustration, and anger among many patients with CLL.
Counseling Patients With CLL on Caring for Their Physical and Mental Health
When counseling patients with CLL on how to protect themselves from COVID-19, I would recommend emphasizing the importance of being extraordinarily careful and following the community’s guidelines for minimizing their risk of infection. At the same time, I would share that although COVID-19 can be very severe in patients with CLL, it has relatively spared most patients with cancer because this population is already being careful about wearing masks and social distancing. Despite the dire outcomes and mortality rates that have been published, there have actually been fewer cases of COVID-19 among patients with cancer than were expected.
I would also advise educating patients with CLL that much of the discouraging information on COVID-19 outcomes comes from very early data. Physicians have become much better at treating COVID-19 compared with early in the pandemic, and the case mortality rate is generally decreasing for everyone. Furthermore, although the data look dismal for patients with CLL, these data were drawn from patients with severe COVID-19 who had presented and registered with a hematologist. The patients with CLL who experienced mild COVID-19 and/or those who were never tested for COVID-19 are not included in these analyses. This means that the published mortality rates probably do not reflect the real-world experience for all patients with CLL who had COVID-19.
It is also critical to assess how the patient is doing psychologically: What kind of social support do they have? Are they exercising? Are they talking to their family online, FaceTiming with children and grandchildren, staying in touch? What is their social life like? It is vitally important to stay in touch with friends, even if that socializing happens on a virtual platform.
If necessary, assess how they are doing in terms of depression and anxiety, along with how they are sleeping and eating. Encourage them to stay as active as they can, and counsel that it is safe to go for walks and to exercise at home.
When I am speaking to patients with CLL, I like to point out that most are experienced at dealing with a chronic and usually slow‑growing, indolent disease. They can use that experience to deal with a fast‑moving illness by understanding that this, too, will pass. There will either be a post–COVID-19 era or an era where COVID-19 is part of the community, but it is managed and the risks are significantly abated. Patients had to make an adjustment when first diagnosed with cancer and now have to make that adjustment again with the reality of the pandemic. This time, they can draw on their expertise as patients with cancer and survivors of cancer to become survivors of COVID-19.
Dr. Koffman, a well-known doctor, educator, and clinical professor turned patient has dedicated himself to teaching and helping the CLL community since his own CLL diagnosis in 2005. Dr. Koffman believes that his dual status as a retired physician and patient provides a unique experience and understanding which allows him to provide clear explanations of complex issues and to advocate for his fellow patients and to inform his fellow healthcare providers. This is especially important in view of the rapidly changing therapeutic landscape. Besides his medical degree, Dr. Koffman has a Master of Science in Medical Education and loves to teach. Dr. Koffman is a retired family doctor and clinical professor at the Keck School of Medicine, USC.
Dr. Koffman co-founded and serves as the Chief Medical Officer and Executive Vice President of the nonprofit CLL Society Inc. and has a widely followed blog. He has shared online and across the world his tough battle with his leukemia including a failed bone marrow transplant, and his successes with two Phase 1 trials including most recently an experimental cellular gene therapy, CAR-T.
What challenges have you had in counseling your patients with CLL about COVID-19? What advice would you give your colleagues? Please leave your thoughts in the comments box below!