Managing patients with chronic lymphocytic leukemia (CLL) can be challenging even under normal circumstances. In this unprecedented COVID-19 era, the challenges to treating patients with CLL have multiplied. In spring and summer 2021, the Association of Community Cancer Centers (ACCC) interviewed six members of the multidisciplinary cancer care team—including a physician, social worker, nurse, and pharmacist to discuss how their organizations are handling the challenge of treating patients with CLL during this pandemic. While there were many similarities in how these providers approached treatment, there were differences as well. Read findings from our interviews below and learn more about the approaches to patient care espoused by different members of the multidisciplinary cancer care team.
Craig Boddy, MD
Hawaii Pacific Health
Jamie McDonald, MSW
Oncology Social Worker
Alissa McEowen, OCN
Oncology Nurse Manager Hematology/ Oncology
Hall-Perrine Cancer Center
Cedar Rapids, IA
John J. Montville, MBA, FACHE, FACMPE, COA
Executive Director Oncology Service Line
Mercy Health – Lourdes Hospital
Christopher Nelson, ACNP
Nurse Practitioner Hematology/ Oncology
Avera Medical Group
Marie Sirek, PharmD
Clinical Pharmacy Specialist - Oral Oncology
Has the number of patients with CLL you are seeing increased, decreased, or remained the same during the pandemic?
Interviewees reported that these numbers have remained about the same. However, Christopher Nelson, ACNP, a nurse practitioner from Avera Medical Group in Aberdeen, South Dakota, said that his patients were initially hesitant to come into the office. During the first phase of the pandemic, he said, there were fewer referrals due to patients avoiding hospitals, clinics, and their primary care providers. As time passed, said Nelson, new patient referrals increased, and they have been consistently higher in the past year than before the pandemic.
What are the most common questions that your patients with CLL ask regarding COVID-19?
Interviewees agreed that their patients’ questions were similar, focusing on their individual risk and how to stay safe. Jamie McDonald, MSW, an oncology social worker with Presbyterian Hospital in Albuquerque, New Mexico, said her patients most often ask if they should delay treatment, how safe it is to be treated, and how CLL might increase their risk for COVID-19 infection. Alissa McEowen, OCN, an oncology nurse manager at the Hall-Perrine Cancer Center in Cedar Rapids, Iowa, said that many patient questions are about getting the vaccine, how it will affect them, and how effective it will be.
Do you recommend that all your patients with CLL get the COVID-19 vaccine?
In general, the answer was yes, although some interviewees explained that there are circumstances that might affect the decision to vaccinate. Craig Boddy, MD, a hematologist from Hawaii Pacific Health in Honolulu, Hawaii, recommended that “patients being treated on IV regimen should target getting the vaccine during the start of the last week in a cycle to limit interactions and optimize vaccine effectiveness.” Nelson said he might recommend stopping an IVIG treatment and restarting after both doses of the vaccine are administered. McEowen said that if her team has a patient with CLL on active treatment, “We screen them and make sure their absolute neutrophil count (ANC) is not below one. If so, we would recommend that they do not get the vaccine.”
What procedures has your cancer program established to screen patients with CLL for COVID-19 before they enter the clinic?
Common answers included screening questions and temperature checks at the clinic door. John Montville, MBA, FACHE, FACMPE, COA, the executive director of the Oncology Service Line at Mercy Health – Lourdes Hospital in Peducah, Kentucky, said his health system has positioned a second screening station in front of its oncology clinic as an additional protective measure. Nelson said if his organization’s screening questions or temperature checks are positive, patients are moved to a separate area of the clinic to be triaged, where a COVID-19 test is administered. If the test is positive, infected persons are taken to a special outpatient area for COVID-19 patients, where they are treated with monoclonal antibodies. If a patient becomes hypoxic, they are directly admitted to the hospital. Dr. Boddy said his facility has done away with temperature checks, as they did not prove to be useful. Dr. Boddy’s health system instead relies primarily on patient screening questions about their symptoms and potential exposure to COVID-19.
McDonald said that if a patient at Presbyterian Hospital is symptomatic at the time of screening during a period of high COVID-19 transmission, the patient would be sent to be triaged and tested by a designated ”COVID nurse.” If a test is positive, the patient would be educated about how to handle their infection at home. Patients in distress may be sent to the emergency department for care.
How does your program use telehealth for patients with CLL?
Interviewees said they widely adopted telehealth for patient care at the start of the pandemic, although its use has tapered since then. “The greatest silver lining that came from the pandemic was telehealth,” said Montville, adding, “but it doesn’t translate well to cancer.” There is no substitute for in-person care for evaluating patients with cancer, said Montville, adding that Mercy Health used telehealth much more widely in other areas of the hospital system, particularly in primary care. Likewise, McEowen said that telehealth in Hall-Perrine Cancer Center was only used by patient request.
Nelson reported that, initially, telehealth was frequently used at Avera Medical Group, especially for nursing home patients. Avera made frequent use of its telehealth room, which connects to its outlying clinics. But during the summer of 2021, telehealth was used less frequently. “It’s challenging to use,” said Nelson, “due to the loss of non-verbal body language.” Avera does not currently use telehealth for new oncology patients.
Dr. Boddy said that approximately 40% of his patient visits occur via telehealth, and 60% occur in person. Marie Sirek, PharmD, a clinical pharmacy specialist at Billings Clinic in Billings, Montana, said telehealth at her organization is used for more apprehensive or distance-challenged patients. She uses audiovisual telehealth extensively to educate patients who are starting an oral oncology agent. Telehealth has allowed patients to include their support systems during visits, while also limiting the number of visitors in the clinic.
How has your cancer program changed follow-up procedures for your patients with CLL in the watch-and-wait phase?
The interviewees mainly agreed that follow-up procedures for those in the watch-and-wait phase have generally not changed. McDonald said that at the initial height of the pandemic, patients were apprehensive to come into the clinic and were more likely to want to delay treatment. Dr. Boddy said that at Hawaii Pacific Health, while protocols for follow-up procedures have not changed, the threshold used to determine when treatment should start has changed. Dr. Boddy asks patients who have lab values that are near the threshold at which treatment is typically indicated to wait until their lab values and/or symptoms deteriorate before beginning treatment.
For patients being actively treated for CLL, do you stop or modify treatment if the patient tests positive for COVID-19?
“I’d definitely hold treatment until they get through the acute phase, typically from two to four weeks after diagnosis,” said Nelson. “But it really varies from person to person.” Dr. Boddy said maintaining treatment would depend on the severity of the patient’s COVID-19 symptoms. In mild cases, he said, treatment might continue as usual. But with more severe symptoms, treatment may be held temporarily.
How have the psychosocial needs of patients with CLL changed since the beginning of the pandemic?
Interviewees widely reported an increase in patients’ fear, anxiety, and isolation after COVID-19 appeared. “Patients were so reluctant to come in, or they wanted to wait or delay further care,” said McDonald. “Much work was done over the phone to help patients adjust to new and unexpected barriers. Self-care was discussed, and expressed anger and fear were de-escalated with those struggling with new limitations and challenges.”
McEowen said her patients still express feeling very isolated: “We have a number of patients who still say, ‘You’re the only person I see every three weeks,’ which contributes to their anxiety and depression.” Her practice refers patients to both in-house social workers and telehealth-based behavioral health services.
Nelson said that patients at Avera Medical Group are more depressed, and their family relationships are strained. He often makes referrals to mental health providers. “Unfortunately, what’s happened over the last year, is that we’ve put our physical health above our mental health,” said Nelson, “and now we need to figure out how to take care of ourselves mentally.” Nevertheless, Dr. Sirek noted a positive change the pandemic has brought about. “In this setting of uncertainty regarding many pandemic-related CLL questions, I’ve seen an improvement in provider/patient open and honest discussions about the gray areas,” said Dr. Sirek, “which is nice to see, since we should be having those tough conversations.”
In the post-pandemic era, do you anticipate that there will be an influx of previously undiagnosed patients with CLL due to the lockdown and the avoidance of doctor visits that might have otherwise discovered the illness?
Most of the interviewees did not have a strong opinion about the pandemic resulting in a surge of previously undiagnosed CLL. But both McEowen and Dr. Boddy said that there could be some uptick in asymptomatic CLL that would otherwise be diagnosed through routine blood tests if those patients were skipping primary care visits.
Oncology practices are doing their best to adapt to the effect COVID-19 is having on their treatment of patients with CLL. We found much agreement in terms of vaccination recommendations, treatment adaptations, and use of telehealth. The variabilities in practice we detected among the interviewees were largely due to geographic and population differences among their organizations and the evolving recommendations for treating patients with CLL during this time. As the science of preventing and treating COVID-19 evolves, it is important for healthcare practitioners to continue to stay up to date with the latest research, treatments, and expert recommendations to give their patients with CLL the best care possible during a very trying time.
Funding & support provided by AbbVie.