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Patient and Family Caregiver Considerations When Selecting Early Breast Cancer Treatment: Implications for Clinical Pathway Development

Author

Listed:
  • Dena Schulman-Green

    (Yale School of Nursing)

  • Emily Cherlin

    (Yale School of Public Health)

  • Renee Capasso

    (Smilow Cancer Hospital)

  • Sarah S. Mougalian

    (Smilow Cancer Hospital
    Yale School of Medicine
    Cancer Outcomes, Public Policy, and Effectiveness Research (COPPER) Center, Yale School of Medicine and Yale Cancer Center)

  • Shiyi Wang

    (Yale School of Public Health
    Cancer Outcomes, Public Policy, and Effectiveness Research (COPPER) Center, Yale School of Medicine and Yale Cancer Center)

  • Cary P. Gross

    (Yale School of Medicine
    Cancer Outcomes, Public Policy, and Effectiveness Research (COPPER) Center, Yale School of Medicine and Yale Cancer Center)

  • Preeti S. Bajaj

    (Genentech, Inc.)

  • Katherine Eakle

    (Genentech, Inc.)

  • Sharmi Patel

    (Genentech, Inc.)

  • Karin Douglas
  • Kerin Adelson

    (Smilow Cancer Hospital
    Yale School of Medicine
    Cancer Outcomes, Public Policy, and Effectiveness Research (COPPER) Center, Yale School of Medicine and Yale Cancer Center)

Abstract

Background While clinical pathways have been widely adopted to decrease variation in cancer treatment patterns, they do not always incorporate patient and family caregiver perspectives. We identified shared patient and family caregiver considerations influencing treatment preferences/decision making to inform development of a shared decision pathway. Methods We conducted qualitative interviews with women who completed initial definitive treatment for stage I–III breast cancer and their family caregivers. As part of a broader interview, we asked participants what they considered when choosing a treatment option for themselves/their loved one. We coded transcribed interviews, analyzed patient and family caregiver datasets separately, and compared findings. Findings Patients’ (n = 22) mean age was 55.7 years, whereas family caregivers’ (n = 20) mean age was 59.5 years, with most (65%) being patients’ spouses/partners. Considerations reported by both groups included cancer status, treatment issues, physical/psychosocial/family consequences, and provider/health care system issues. Data revealed three key tensions that arise during treatment decision making: (1) having enough information to set expectations but not so much as to be overwhelming; (2) balancing the highest likelihood of cure with potential physical/emotional/social/financial consequences of the chosen treatment; and (3) wanting to make data-driven decisions while having a personalized treatment plan. Discussion Patients and family caregivers identified several considerations of shared relevance reflecting different perspectives. Efforts to balance considerations can produce tensions that may contribute to decision regret if unaddressed. Conclusion Clinical pathways can increase exposure to decision regret if treatment options are selected without consideration of patients’ priorities. A shared decision pathway that incorporates patient-centeredness could facilitate satisfactory decision making.

Suggested Citation

  • Dena Schulman-Green & Emily Cherlin & Renee Capasso & Sarah S. Mougalian & Shiyi Wang & Cary P. Gross & Preeti S. Bajaj & Katherine Eakle & Sharmi Patel & Karin Douglas & Kerin Adelson, 2020. "Patient and Family Caregiver Considerations When Selecting Early Breast Cancer Treatment: Implications for Clinical Pathway Development," The Patient: Patient-Centered Outcomes Research, Springer;International Academy of Health Preference Research, vol. 13(6), pages 683-697, December.
  • Handle: RePEc:spr:patien:v:13:y:2020:i:6:d:10.1007_s40271-020-00426-7
    DOI: 10.1007/s40271-020-00426-7
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    References listed on IDEAS

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    1. Charles, Cathy & Gafni, Amiram & Whelan, Tim, 1999. "Decision-making in the physician-patient encounter: revisiting the shared treatment decision-making model," Social Science & Medicine, Elsevier, vol. 49(5), pages 651-661, September.
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