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Informational Needs of Patients with Metastatic Breast Cancer: What Questions Do They Ask, and Are Physicians Answering Them?

Abstract

In the setting of breast oncology consultations, we sought to understand communication patterns between patients with advanced breast cancer and their oncologists during visits with Decision Support Services. This is a descriptive study analyzing themes and their frequencies of premeditated question lists of patients with metastatic breast cancer. We identified topics physicians most commonly discussed among themes previously found, documenting questions patients with metastatic breast cancer prepare for physician consultations and oncologists’ response. Inclusion criteria were as follows: diagnosis of metastatic breast cancer, completion of a question list before meeting with an oncologist, and receipt of a summary of the consultation. We identified 59 women with metastatic breast cancer who received both documents. We reviewed the question lists and consultation summaries of these patients. Of the 59 patients whose documents we reviewed, patients most often asked about prognosis (38), symptom management (31), clinical trials (43), and quality of life (38). Physicians answered questions about prognosis infrequently (37 % of the time); other questions that were answered more than commonly are the following: symptom management (81 %), clinical trials (79 %), and quality of life (66 %). Breast cancer patients have many questions regarding their disease, its treatment, and symptoms, which were facilitated in this setting by Decision Support Services. Question lists may be insufficient to bridge the divide between physicians and patient information needs in the setting of metastatic breast cancer, particularly regarding prognosis. Patients may need additional assistance defining question lists, and physicians may benefit from training in communication, particularly regarding discussions of prognosis and end of life.

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References

  1. 1.

    Gennari A et al (2005) Survival of metastatic breast carcinoma patients over a 20-year period—a retrospective analysis based on individual patient data from six consecutive studies. Cancer 104(8):1742–1750

    Article  PubMed  Google Scholar 

  2. 2.

    Moulder S, Hortobagyi GN (2008) Advances in the treatment of breast cancer. Clin Pharmacol Ther 83(1):26–36

    CAS  Article  PubMed  Google Scholar 

  3. 3.

    Janis IL, Mann L (1977) Decision-making: a psychological analysis of conflict, choice and commitment. Free Press, New York

    Google Scholar 

  4. 4.

    Lazarus RS, Folkman S (1984) Stress, appraisal, and coping. Springer, New York

    Google Scholar 

  5. 5.

    O’Brien MA et al (2009) Are cancer-related decision aids effective? A systematic review and meta-analysis. J Clin Oncol 27(6):974–985

    Article  PubMed  Google Scholar 

  6. 6.

    Belkora JK et al (2009) Implementing decision and communication aids to facilitate patient-centered care in breast cancer: a case study. Patient Educ Couns 77(3):360–368

    Article  PubMed  Google Scholar 

  7. 7.

    O’Connor AM, Tugwell P, Wells GA, Elmslie T, Jolly E, Hollingworth G, McPherson R, Bunn H, Graham I, Drake E (1998) A decision aid for women considering hormone therapy after menopause: decision support framework and evaluation. Patient Educ Couns 33(3):267–279

    Article  PubMed  Google Scholar 

  8. 8.

    Butow P, Devine R, Boyer M, Pendlebury S, Jackson M, Tattersall MH (2004) Cancer consultation preparation package: changing patients but not physicians is not enough. J Clin Oncol 22(21):4401–4409

    Article  PubMed  Google Scholar 

  9. 9.

    Clayton JM, Butow PN, Tattersall MH, Devine RJ, Simpson JM, Aggarwal G (2007) Randomized controlled trial of a prompt list to help advanced cancer patients and their caregivers to ask questions about prognosis and end-of-life Care. J Clin Oncol 25(6):715–723

    Article  PubMed  Google Scholar 

  10. 10.

    Mayer M, Grober SE (2006) Silent voices: women with advanced (metastatic) breast cancer share their needs and preferences for information, support, and practical resources. A report from Living Beyond Breast Cancer. Available at http://www.lbbc.org/Understanding-Breast-Cancer/Guides-to-Understanding-Breast-Cancer/Silent-Voices. Accessed 13 Oct 2013

  11. 11.

    Pass M, Volz S, Teng A, Esserman L, Belkora J (2012) Physician behaviors surrounding the implementation of decision and communication aids in a breast cancer clinic: a qualitative analysis of staff intern perceptions. J Cancer Educ 27(4):764–769

    CAS  Article  PubMed  Google Scholar 

  12. 12.

    Belkora JK et al (2008) Monitoring the implementation of consultation planning, recording, and summarizing in a breast care center. Patient Educ Couns 73(3):536–543

    PubMed Central  Article  PubMed  Google Scholar 

  13. 13.

    Belkora JK et al (2011) Expanding the reach of decision and communication aids in a breast care center: a quality improvement study. Patient Educ Couns 83(2):234–239

    Article  PubMed  Google Scholar 

  14. 14.

    Mayer M (2010) Lessons learned from the metastatic breast cancer community. Semin Oncol Nurs 26(3):195–202

    Article  PubMed  Google Scholar 

  15. 15.

    Steinhauser KE et al (2000) In search of a good death: observations of patients, families, and providers. Ann Intern Med 132(10):825–832

    CAS  Article  PubMed  Google Scholar 

  16. 16.

    Wenrich MD et al (2001) Communicating with dying patients within the spectrum of medical care from terminal diagnosis to death. Arch Intern Med 161(6):868–874

    CAS  Article  PubMed  Google Scholar 

  17. 17.

    Hack TF, Degner LF, Parker PA (2005) The communication goals and needs of cancer patients: a review. Psychooncology 14(10):831–845, discussion 846–7

    Article  PubMed  Google Scholar 

  18. 18.

    Clayton JM et al (2007) Clinical practice guidelines for communicating prognosis and end-of-life issues with adults in the advanced stages of a life-limiting illness, and their caregivers. Med J Aust 186(12 Suppl): p S77, S79, S83-108

    Google Scholar 

  19. 19.

    Fallowfield LJ, Jenkins VA, Beveridge HA (2002) Truth may hurt but deceit hurts more: communication in palliative care. Palliat Med 16(4):297–303

    CAS  Article  PubMed  Google Scholar 

  20. 20.

    Knauft E et al (2005) Barriers and facilitators to end-of-life care communication for patients with COPD*. CHEST J 127(6):2188–2196

    Article  Google Scholar 

  21. 21.

    McGorty EK, Bornstein BH (2003) Barriers to physicians’ decisions to discuss hospice: insights gained from the United States hospice model. J Eval Clin Pract 9(3):363–372

    Article  PubMed  Google Scholar 

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Acknowledgments

We would like to thank the patients who participated in this study, the observers who collected the data, and the physicians who agreed to have their appointments observed and contribute to the Shared Decision Making Services.

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Correspondence to M. Danesh.

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Danesh, M., Belkora, J., Volz, S. et al. Informational Needs of Patients with Metastatic Breast Cancer: What Questions Do They Ask, and Are Physicians Answering Them?. J Canc Educ 29, 175–180 (2014). https://doi.org/10.1007/s13187-013-0566-x

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Keywords

  • Metastatic
  • Breast
  • Cancer
  • Communication
  • Decision
  • Support