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The Patient’s Voice: Adherence, Symptoms, and Distress Related to Adjuvant Endocrine Therapy After Breast Cancer

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Abstract

Background

While adjuvant endocrine therapy (AET) for early-stage, hormone-sensitive breast cancer confers a 40–50% reduction in recurrence risk, adherence to AET is suboptimal, and no efficacious interventions exist to improve adherence. A qualitative study was conducted to understand patient experiences on AET, motivators and barriers to adherence, side effects, and distress, with the goal of developing a patient-centered, evidence-based intervention.

Method

From November 2017 to November 2018, female patients with early-stage, hormone receptor–positive breast cancer taking AET were recruited. Patients with low and high medication adherence of varying ages, levels of distress, and years taking AET were purposefully enrolled. In-depth semi-structured interviews were conducted, audio recorded, and transcribed. Study staff created a thematic framework, and three independent researchers coded interviews using NVivo 11, achieving high inter-coder agreement (Kappa = .96).

Results

Thirty interviews were conducted with patients who were, on average, 55.13 years old (SD = 12.37) and had been taking AET for a mean of 1.76 years (SD = 0.75). The sample was stratified by adherence level (low = 20; high = 10). Recurrent themes related to adherence included a commitment to AET to prevent recurrence despite distressing side effects, lack of strategies to cope with symptoms and distress, and desire for emotional support from others taking AET. Patients were highly accepting of a proposed psychosocial intervention to manage AET.

Conclusion

Patients are committed to taking AET to prevent breast cancer recurrence, but need and desire psychosocial support and skills training. Themes from this study are modifiable targets for a psychosocial, evidence-based intervention to promote adherence, coping with side effects, and distress management.

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Acknowledgments

We would like to thank the study participants for their time and effort, as well as the breast oncology clinicians for referring their patients to the study.

Funding

Research reported in this publication was supported by the National Cancer Institute of the National Institutes of Health under award number K07CA211107 (Total project costs: $821,496). The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.

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Authors and Affiliations

  1. Massachusetts General Hospital, 55 Fruit Street, Yawkey, Suite 10B, Boston, MA, 02114, USA

    Jamie M. Jacobs, Emily A. Walsh, Elyse R. Park, Jonathan Berger, Jeffrey Peppercorn, Nora Horick, Jennifer S. Temel & Joseph A. Greer

  2. Harvard Medical School, Boston, MA, USA

    Jamie M. Jacobs, Elyse R. Park, Jeffrey Peppercorn, Ann Partridge, Jennifer S. Temel & Joseph A. Greer

  3. Dana-Farber Cancer Institute, Boston, MA, USA

    Ann Partridge

  4. University of Miami, Coral Gables, FL, USA

    Emily A. Walsh & Steven A. Safren

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Correspondence to Jamie M. Jacobs.

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Conflict of Interest

Dr. Peppercorn reports research funding from Pfizer, GlaxoSmithKline. All other authors declare that they have no conflict of interest.

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Informed consent was obtained from all individual participants included in the study.

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All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.

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Jacobs, J.M., Walsh, E.A., Park, E.R. et al. The Patient’s Voice: Adherence, Symptoms, and Distress Related to Adjuvant Endocrine Therapy After Breast Cancer. Int.J. Behav. Med. 27, 687–697 (2020). https://doi.org/10.1007/s12529-020-09908-2

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