Improving Quality of Cancer Care by Integrating Considerations of Shared Importance to Patients and Family Caregivers into Clinical Pathway Platforms

November 2020 Vol 11, No 11
Dena Schulman-Green, PhD
Yale School of Nursing
Emily Cherlin, PhD, MSW
Yale School of Public Health
Renee Capasso, BS
Smilow Cancer Hospital
Sarah S. Mougalian, MD
Smilow Cancer Hospital
Yale School of Medicine
Shiyi Wang, MD, PhD
Yale School of Public Health
Cary P. Gross, MD
Yale School of Medicine
Preeti S. Bajaj, PhD
Genentech, Inc.
Katherine Eakle, PharmD
Genentech, Inc.
Sharmi Patel, PharmD
Genentech, Inc.
Kerin Adelson, MD
Smilow Cancer Hospital
Yale School of Medicine

Background: Clinical pathways have increasingly been incorporated into cancer care, aiming to encourage high-quality, evidence-based care while minimizing costs; however, clinical pathways infrequently incorporate patient and family perspectives, limiting patient-centeredness and value for shared decision-making.

Objectives: We sought to identify considerations that influence treatment decision-making among patients and family caregivers facing nonmetastatic breast cancer to inform development of a shared decision pathway.

Methods: Using an interpretive description approach, we conducted individual qualitative interviews with women treated for stage I-III breast cancer and their family caregivers at Smilow Cancer Hospital in New Haven, CT. We asked participants what they consider when choosing a treatment option for themselves/the patient. We coded transcribed interviews, analyzed patient and family caregiver data sets separately, and compared findings.

Results: Patients (n = 22, mean age = 56 years) reported having stage I (32%), stage II (41%), and stage III (27%) cancer. Of family caregivers (n = 20, mean age = 60 years), 65% were patients’ spouses/partners. Considerations reported by both groups included: cancer stage/type; treatment issues; physical, psychosocial, and family consequences; and provider/healthcare system issues. Data revealed 3 tensions that arise during treatment decision-making relevant to both patients and family caregivers: (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, and financial consequences of the chosen treatment; and (3) wanting to make data-driven decisions while having a personalized treatment plan. If unaddressed, these tensions often led to decision regret. We found that patients and family caregivers do not make decisions at one moment in time in their oncologist’s office; they need to revisit information sources in multiple settings.

Conclusions: When approaching decisions about breast cancer care, patients and family caregivers identified multiple considerations of shared relevance that should be addressed. When tensions arise between competing priorities, failure to resolve them can lead to decision regret and negative impact on emotional well-being. Development of shared decision-making tools should focus on helping patients to resolve these tensions.

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Last modified: August 10, 2023

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