Understanding Patient Perceptions of De-Escalating Chemotherapy During the COVID-19 Pandemic

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Oncologists are interested in de-escalating the amount of chemotherapy delivered to patients based on excellent survival outcomes in breast cancer treatment and cutting-edge methods used to predict response to treatment. Recognizing that patient perspectives of de-escalation may be skewed by perceived risk of COVID-19, a semi-structured interview was used to acquire data from breast cancer patients and patient advocates from nationally representative advocacy organizations between October 2019 and May 2020. Additionally, from a nationwide sample of women with breast cancer, cross-sectional survey data was acquired for a shorter timespan between November 2019 and December 2019.

Questionnaires were used to gauge interest in participating in a de-escalation study, perceived barriers or drivers to participation, and language describing de-escalation. Based on interviews conducted after March 2020, perspectives of patients regarding the effect of COVID-19 on de-escalation provided synergistic quantitative and qualitative outcomes. A total of 40 interviews were conducted, involving 24 patients and 16 patient advocates. Interviewees’ ages ranged from 33 to 79 years old. Nearly one-third (30%) of these patients were minorities, and slightly more than one-third (35%) did not have a college degree.

Fear of cancer recurrence, concern about decision regret, lack of clinical trial interest, and distaste for participating in a study focused on less treatment, were the most frequently cited barriers to de-escalation. When responding to 1 of the open-ended questions, 1 participant stated, “I’m just afraid it wouldn’t get it all.” This highlights the significance of fear of recurrence, which was the most commonly expressed barrier to enrolling in the de-escalation study. On the other hand, positive impact on daily life, trusting the physician, avoiding toxicity, monitoring with the option of increasing treatment intensity, and the perception of a good prognosis, were cited frequently as facilitators to participate in the de-escalation study.

During the COVID-19 pandemic, 16 participants were interviewed, and they expressed significant and wide-ranging fears of the virus, their immunocompromised state, anxiety about exposure, being infected by their personal contacts or healthcare team, and cancer-related complications. Fears and anxiety impacted patient perception on de-escalation; this was underscored by participants’ statements such as, “Less is more for me right now,” and “I wouldn't worry about getting the chemo as much as I would worry about getting the virus.”

The investigators received a response rate of 69% for the survey of women with breast cancer. The median age of the 91 survey respondents was 58 years old, and early-stage breast cancer was the diagnosed condition in 86% of patients. Forty-three percent of patients did not feel that participating in a study offering lower doses of chemotherapy than standard of care was acceptable. Patients with no interest in participating in the study were more likely to be unmarried, disabled, or diagnosed with early-stage breast cancer. Fear of cancer recurrence was cited by 85% of participants as a barrier to participation; additionally, 79% expressed potential regret about the decision to receive less chemotherapy if the cancer were to recur. Approximately one-fifth of patients felt clinical trials themselves were a barrier. Of the patients who expressed interest in participating, 82% cited reduced physical side effects of treatment, 76% cited reduction in long-term problems related to treatment, and 72% cited reduced impact on daily life as reasons for wanting to participate. When queried on preferred terminology to describe chemotherapy de-escalation, 53% favored “lowest effective chemotherapy dose” and no patients expressed a preference for the term “de-escalation.”

For patients with breast cancer, fear of recurrence was a significant barrier to participating in a de-escalation clinical trial. It appears that the COVID-19 pandemic shifted patients’ fears as they received treatment. Important factors that positively influenced interest in de-escalation were trust in the physician and describing the process as “customized,” which seemed to be a preferred patient-generated language. Future clinical trials and research can potentially benefit from these findings when recruiting.

Source

Rocque G, Williams CP, Andrews CJ, et al. Patient perspectives on chemotherapy de-escalation: “Don’t de-escalate! I don’t want to die!” Presented at: 2020 San Antonio Breast Cancer Symposium, December 8-11. PD3-10.

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