Abstract PS9-01: Consumer and patient reactions to trials of chemotherapy reductions reveal an urgent need to name and explain the concept
Authors: Smith Mary L , Railey Elda , White Carol B , Hill Janine , Andrews Courtney J , Rocque Gabrielle B 
Published: February 2021

Abstract
Introduction: A growing trend in cancer research is the study of de-escalation of treatment, particularly chemotherapy. The hope is that eliminating or reducing drug(s) from treatment regimens will reduce toxicity burden and increase quality of life without increasing risk of recurrence and death. Large well-designed clinical trials are needed to ensure this hope is a reality. One such trial is EA1181 CompassHER2 pCR, which has an accrual goal of 1,250 patients.
Methods: This qualitative study included: (A) 2 focus groups with patients diagnosed with HER2+ breast cancer 3-5 years ago, for their ability to draw on their experience and react to the trial and (B) 3 focus groups with consumers who have never had a cancer diagnosis, for their ability to provide the “cancer-naïve” perspective that may more closely match that of newly diagnosed patients (the EA1181 population). One of the consumer groups was composed of Black women and moderated by a Black facilitator to allow issues to surface that may be specific to this group. Patients were identified via Living Beyond Breast Cancer; consumers were identified via a nationwide market research panel. Groups took place online in April and May 2020, after the COVID pandemic had begun. After a brief introduction to the trial, questions focused on: Reactions and questions, motivations, concerns, and descriptive language.
Results: A total of 30 women (11 patients and 19 consumers) participated, representing a mix of age groups, educational attainment, and racial and ethnic social identities.
The trial description raised many questions in participants’ minds. Some of the more frequent responses from both patients and consumers related to the rationale for reducing treatment and the side effects and benefits of each drug. Consumers demonstrated confusion between what is to be tested in the trial versus what is part of the neoadjuvant process. Patients questioned the timeline and length of each step.
Motivations for participation centered on avoiding some chemotherapy and the associated side effects, costs, and recovery time. Some discussed taking only what is needed.
Concerns were significant and centered on: (A) Fear and the feeling that it is best to take everything, (B) Possible lengthened duration of treatment since chemotherapy may be needed after surgery (versus the certainly of having all chemo prior to surgery). The duration issue generated strongly negative reactions among patients who felt they would prefer chemo and its side effects all at once.
Some motivations and barriers also seemed tied to the likelihood of not needing post-surgical chemo, with participants expecting thresholds (unaided) of 50% to 80% of the perceived desirable outcome.
Language around the concept is a critical issue. Participants expressed many ideas related to possible milder treatment that is modified. The word, de-escalation, garnered very negative reactions including many comparisons to military action. Toxicity is also a term that was less familiar to consumers and disliked by many as it elicits additional fear; “side effects” seems more familiar and palatable.
Conclusion: Communication about trials with reduced chemotherapy will need to be effective to lead to successful accrual. Providing tools to oncologists and patients to enhance two-way communication may be necessary to ensure concepts are understood. Since de-escalation is already becoming a term commonly used by researchers, replacing it with a more effective descriptor that is clear and connects to the benefits appears time-critical. Quantifying reactions to language options and other qualitative findings via a survey with a larger sample of consumers and patients is advised. Including patient voices in trial design, as well as consumers particularly for trials for the newly-diagnosed, sheds light on communication needs.
Citation Format: Mary L Smith, Elda Railey, Carol B White, Janine Hill, Courtney J Andrews, Gabrielle B Rocque. Consumer and patient reactions to trials of chemotherapy reductions reveal an urgent need to name and explain the concept [abstract]. In: Proceedings of the 2020 San Antonio Breast Cancer Virtual Symposium; 2020 Dec 8-11; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2021;81(4 Suppl):Abstract nr PS9-01.