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Metastatic Breast Cancer Collateral Damage Project (MBCCD): Scale development and preliminary results of the Survey of Health, Impact, Needs, and Experiences (SHINE)

  • Preclinical study
  • Published:
Breast Cancer Research and Treatment Aims and scope Submit manuscript

Abstract

Purpose

Until recently, people with metastatic breast cancer (MBC) had a very poor prognosis. New treatment approaches have prolonged the time that people with MBC live, but their quality of life has received less attention. Consequently, the needs and concerns across financial, vocational, psychological, social, and physical domains in MBC patients are poorly understood—particularly regarding the collateral damage or longer-term, life-altering impacts of MBC and its treatments. This study’s aims were to characterize MBC-related collateral damage, identify groups most likely to experience collateral damage, and examine its associations with psychological health, illness management, and health behaviors.

Methods

Participants (N = 515) with MBC were recruited from Dr. Susan Love Research Foundation’s Army of Women® and other advocacy organizations. Participants completed questionnaires of MBC-related collateral damage, depressive symptoms, anxiety, self-efficacy for managing oncologic treatments and physical symptoms, sleep, and physical activity.

Results

Eight domains of MBC-related collateral damage, as well as MBC-related benefit finding, were reliably characterized. Concerns about mortality/uncertainty were most prominent. Participants also endorsed high levels of benefit finding. Participants younger than 50 years, with limited financial resources, or with children under 18 at home reported the most collateral damage. Collateral damage was associated significantly with compromised psychological health, lower illness management efficacy, and poorer health behaviors, beyond sociodemographic and medical characteristics.

Conclusions

Subgroups of MBC patients report long-term, life-altering consequences of MBC and its treatments, which relate to important health outcomes. Clinical implications and recommendations are discussed.

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Data availability

The datasets generated during and/or analyzed during the current study are available from the corresponding author on reasonable request.

Notes

  1. One item included in the benefit finding subscale also loaded onto the self-concept disruption subscale at (− 0.44), which is weaker in magnitude than the other self-concept disruption item factor loadings. As such, this item was retained on the benefit finding subscale.

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Acknowledgements

We are grateful to the women and men who participated in this research. We are grateful to our advocate task force, including Cecilia Alvear (in memoriam), Dikla Benzeevi, Virginia Empey, Beth Fairchild, Michael Kovarik, Sheila McGlown, Carol Miele, RN, B.S., MPH, Lori Marx Rubiner (in memoriam), Sandra Spivey, Lynn Tramonte, Patricia Wu, Ed.D., and others, for their dedication to this research. This research was supported in part by a National Institute of Mental Health Predoctoral Fellowship (Williamson, MH 15750), the Breast Cancer Research Foundation (Stanton), Pfizer, Avon Breast Cancer Crusade, Celgene, Genentech, and Lilly Oncology.

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Authors and Affiliations

  1. Department of Psychology, University of California, 1285 Franz Hall, Box 951563, Los Angeles, CA, 90095-1563, USA

    Timothy J. Williamson, Alexandra Jorge-Miller & Annette L. Stanton

  2. Dr. Susan Love Research Foundation, Encino, CA, USA

    Susan M. Love, Leah Eshraghi & Heather Cooper Ortner

  3. Department of Population Sciences, Beckman Research Institute of City of Hope, Duarte, CA, USA

    Jessica N. Clague DeHart

  4. Department of Psychiatry and Biobehavioral Sciences, University of California, Los Angeles, CA, USA

    Alexandra Jorge-Miller & Annette L. Stanton

  5. Jonsson Comprehensive Cancer Center, University of California, Los Angeles, CA, USA

    Annette L. Stanton

  6. Cousins Center for Psychoneuroimmunology, University of California, Los Angeles, CA, USA

    Annette L. Stanton

Authors
  1. Timothy J. Williamson
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  2. Susan M. Love
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  3. Jessica N. Clague DeHart
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  4. Alexandra Jorge-Miller
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  5. Leah Eshraghi
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  6. Heather Cooper Ortner
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  7. Annette L. Stanton
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Correspondence to Annette L. Stanton.

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Ethical approval

This research complied with laws of the country in which it was performed. 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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Informed consent was obtained from all individual participants included in the study.

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Williamson, T.J., Love, S.M., Clague DeHart, J.N. et al. Metastatic Breast Cancer Collateral Damage Project (MBCCD): Scale development and preliminary results of the Survey of Health, Impact, Needs, and Experiences (SHINE). Breast Cancer Res Treat 171, 75–84 (2018). https://doi.org/10.1007/s10549-018-4823-x

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  • DOI: https://doi.org/10.1007/s10549-018-4823-x

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