Patient perspectives on chemotherapy de-escalation: “Don't de-escalate! I don't want to die!”
Authors: S. Gallagher, E. Hughes, E. Rosenthal, A. W. Kurian, S. Domchek, J. Garber, B. Probst, B. Morris, P. Tshiaba, B. Roa, T. P. Slavin, S. Wagner, J. N. Weitzel, A. Gutin, J. S. Lanchbury, M. E. Robson
Journal: Cancer Research (2021)

Introduction: Given excellent survival outcomes in breast cancer and new methods to predict treatment response, oncologists are interested in de-escalating the amount of chemotherapy delivered to patients  This is particularly important in the setting of COVID-19, where patient perspectives of de-escalation may be altered by perception of COVID-19 risk Methods: This concurrent mixed methods study included (1) semi-structured interview data from patients with breast cancer treated at the University of Alabama at Birmingham and patient advocates from nationally representative advocacy organizations (10/2019-5/2020) and (2) cross-sectional survey data from a nationwide sample of women with breast cancer (11/19-12/2019)  Questions evaluated interest in de-escalation study participation, perceived barriers/facilitators to participation, and language describing de-escalation  Participant perspectives surrounding COVID-19 impact on de-escalation were elicited in interviews post 3/2020 Results: Quantitative and qualitative findings were synergistic  Interviews were conducted with 40 female participants (24 patients, 16 patient advocates)  Participant ages ranged from 33-79 years old;30% were minorities;35% didn't have a college degree  Common barriers to acceptance of de-escalation included fear of recurrence, worry about decision regret, lack of clinical trial interest, and dislike for the focus on less treatment  Fear of recurrence was the most commonly expressed barrier, with one participant stating, “I'm just afraid it wouldn't get it all”  Common facilitators included trust in the physician, toxicity avoidance, monitoring with the option of increasing treatment intensity, perception of good prognosis, and impact on daily life  Participants interviewed during the COVID-19 pandemic (n=16) expressed substantial virus-related fear, including fear of exposure, fear of infecting their personal contactsor health care team, fear of cancer-related complications, and fear about their immunocompromised state  Thesefears contributed to participants perspective on de-escalation, as highlighted by participants stating, “I wouldn'tworry about getting the chemo as much as I would worry about getting the virus” and “Less is more for me rightnow” Of 91 survey respondents (69% response rate), median age was 58 years (interquartile range [IQR] 48-69),86% had early stage breast cancer  Many (43%) patients were not interested in participation in a study testing lowerdoses of chemotherapy than standard of care  Patients not interested in participating were more often unmarried(55% vs  32%, V= 23), disabled (56% vs  40%, V= 17), or diagnosed with early stage cancer (45% vs  22%, V= 14) Barriers to participation included fear of cancer recurrence (85%) and regret about the decision to receive lesschemotherapy if the cancer were to recur (79%)  Few patients (19%) considered clinical trials themselves as abarrier  Patients were interested in participation due to lessened physical side effects of treatment (82%), lessenedlong-term problems related to treatment (76%), and lessened impact on daily life (72%)  The most popularterminology describing chemotherapy de-escalation was “lowest effective chemotherapy dose” (53%);no patientspreferred the term “de-escalation ” Conclusion: Fear of recurrence is a common barrier to de-escalation clinical trial participation in patients withbreast cancer  Fears may be altered for patients considering treatment during the COVID-19 pandemic  Trust in thephysician and use of patient-generated language, such as “customized” instead of “de-escalation”, are potentialareas for future interventions engaging patients in trials