‘It sounds very negative’

How language affects patient perspectives on chemotherapy de-escalation

Authors

  • Courtney Andrews University of Alabama at Birmingham
  • Valerie M Lawhon University of Alabama at Birmingham
  • Kimberly Wiseman Wake Forest School of Medicine, Winston-Salem, North Carolina
  • Gabrielle B Rocque University of Alabama at Birmingham

DOI:

https://doi.org/10.1558/cam.20721

Keywords:

de-escalation, chemotherapy, clinical trials, doctor-patient communication, patient-centered language, therapeutic misconception

Abstract

New developments in cancer research provide opportunities to reduce the amount or intensity of chemotherapy for patients with early-stage breast cancer (EBC), with the goal of achieving recurrence-free survival rates equivalent to the current standard of care while reducing the short- and long-term toxicities that are associated with more aggressive chemotherapy regimens. Clinical trials are necessary to determine the lowest effective dosage of chemotherapy, and there is interest from patients and providers to enroll eligible patients in these trials. Currently, the word being used to describe these trials is ‘de-escalation’. This paper considers the reactions of EBC patients and patient advocates to the word ‘de-escalation’ and how best to describe this approach and its anticipated benefits. Based on a patient survey and on interviews that were coded with the assistance of a content analysis program, we found that the participants tended to react negatively to ‘de-escalation’, with many associating this word with giving up in the war against cancer. Instead, the participants prefer positive, patient-centered language. This information will be useful to providers in considering how best to describe de-escalation clinical trials to eligible patients in ways that avoid therapeutic misconception and facilitate the
shared decision-making process regarding treatment.

Author Biographies

  • Courtney Andrews, University of Alabama at Birmingham

    Courtney Andrews is a medical anthropologist with extensive training and experience in conducting and analyzing qualitative data on health outcomes and health-related experiences. He serves as the Program
    Manager at the Institute for Human Rights and as Adjunct Professor in the Anthropology Department at the University of Alabama at Birmingham.

  • Valerie M Lawhon, University of Alabama at Birmingham

    Valerie Lawhon is a graduate student and research coordinator in the School of Medicine, Division of Hematology and Oncology at the University of Alabama at Birmingham. She has experience in qualitative analysis in health services research.

  • Kimberly Wiseman, Wake Forest School of Medicine, Winston-Salem, North Carolina

    Kimberly Wiseman is a Master’s-level public health researcher with experience in qualitative and quantitative research methodologies. She serves as Q-PRO Program Manager in the Division of Public Health Sciences and the Department of Social Sciences and Health Policy at Wake Forest School of Medicine.

  • Gabrielle B Rocque, University of Alabama at Birmingham

    Gabrielle Rocque is an Associate Professor of Medicine in the Divisions of Hematology & Oncology and Gerontology, Geriatrics, & Palliative Care at the University of Alabama at Birmingham (UAB). She also completed a Master’s of Science in Public Health from UAB. She currently practices as a medical oncologist, specializing in the care of women with breast cancer. Her research interests include improving the quality of healthcare delivery for cancer patients with an emphasis on shared decision-making, payment reform and provision of supportive care services to patients. She has experience in conducting qualitative analysis and mixed methods research.

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Published

2022-12-31

Issue

Vol. 18 No. 1 (2021)

Section

Articles

License

copyright Equinox Publishing Ltd.

How to Cite

Andrews, C., Lawhon, V. M., Wiseman, K., & Rocque, G. B. (2022). ‘It sounds very negative’: How language affects patient perspectives on chemotherapy de-escalation. Communication and Medicine, 18(1), 1–13. https://doi.org/10.1558/cam.20721