Patient-Centered Decision-Making in Metastatic Breast Cancer Care Delivery: A Call to Action

Authors:
Gabrielle B. Rocque Divisions of Hematology & Oncology and Gerontology, Geriatrics, & Palliative Care, University of Alabama, Birmingham, Alabama

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Manali I. Patel Department of Medicine, Stanford University, Stanford, CA, and Medical Services, VA Palo Alto Health Care System, Palo Alto, California

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Lauren P. Wallner Departments of Internal Medicine and Epidemiology, University of Michigan, Ann Arbor, Michigan

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Stacy C. Bailey Division of General Internal Medicine, Feinberg School of Medicine, Northwestern University, Chicago, Illinois

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Rebekkah Schear Polaris Global Health Solutions, Austin, Texas

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Christine M. Gunn The Dartmouth Institute for Health Policy and Clinical Practice, Geisel School of Medicine; Dartmouth Cancer Center, Lebanon, New Hampshire

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Jamil Rivers The Chrysalis Initiative, Philadelphia, Pennsylvania

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Rozanne Wilson PRECISIONheor, Vancouver, BC, Canada

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Emily C. Freeman Gilead Sciences, Inc., Foster City, California

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Trudy L. Buckingham Gilead Sciences, Inc., Foster City, California

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Suepattra G. May PRECISIONheor, New York, New York

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Arif H. Kamal American Cancer Society, Charlotte, North Carolina

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Patient-centered care was most recently defined by the National Academy of Sciences in 2001 as “providing care that is respectful of and responsive to individual patient preferences, needs, and values and ensuring that patient values guide all clinical decisions.”1 Notably, this care approach counters a unidirectional, clinician-driven model where the clinician’s voice and expertise is paramount. The introduction of the Patient Protection and Affordable Care Act in 2010 also heralded a major reform of the US health care delivery system, with an increased focus on patient-centered care delivery and research.2,3 The subsequent impact on cancer care payment through oncology patient–centered medical homes; alternative payment models such as the Oncology Care Model and its successor, the Enhancing Oncology Care Model; along with comprehensive investment in research, has further demonstrated an increasing prioritization of patient engagement to improve cancer care outcomes.25 Most recently, the US Department of Health and Human Services, in collaboration with the National Cancer Institute, released the National Cancer Plan roadmap, which is focused on 8 essential goals to improve the lives of people diagnosed with cancer, including delivery of evidence-based, patient-centered care.6

Cornerstone to patient-centered care is a highly functional patient–clinician relationship that is based on a collaborative partnership that promotes bidirectional communication, empathy, respect, comfort, and perspective-sharing.79 This partnership allows clinicians to better understand their patients as individuals with unique experiences, values, preferences, and care needs, and helps patients to better grasp their condition and evidence-based care options.9 Further supporting a patient’s early involvement in their health care, including identification of their care goals and treatment preferences, or the extent they wish to be involved in decisions (eg, shared or delegated to family or clinicians) is essential.10

Metastatic breast cancer (mBC), an advanced and incurable form of breast cancer,11 offers the opportunity to consider how a patient-centered approach can be operationalized in today’s oncology care environment. Given the complex nature of an mBC diagnosis, care teams often comprise multiple specialists, and treatment choices require weighing risks and benefits. Prioritizing the patient–clinician relationship is essential for guiding clinical decisions and delivering high-quality care that aims to improve outcomes.12 In 2022, a multidisciplinary working group comprising expert key partners in breast oncology, health services research, decision sciences, health literacy, and patient advocacy convened to form the Innovative Patient-Centered Decision-Making Consortium (I-PCDMC). Across 2 separate in-person meetings (July and October), the I-PCDMC discussed the current state of treatment decision-making in mBC care, including the key components of patient-centered decision-making (PCDM), best practices for implementation, and measurement of PCDM.

This commentary provides an expert-guided synthesis of the hypotheses, findings, components, and research gaps of PCDM for mBC care delivery, with the intent to optimally support the practice and measurement of PCDM over the long term. We propose a call to action for community-engaged, patient-centered research to identify strategies for implementation and measurement of PCDM in clinical practice.

Treatment Decision-Making in Oncology

To date, considerable scholarship has focused on shared decision-making (SDM) in the clinical practice setting.1316 SDM focuses on eliciting patient preferences and values in evidence-based medical decision-making.13,17,18 It originated from a need to address observed clinical practice pattern variations that were unrelated to patients’ health status during preference sensitive decisions, as well as an increased focus on matching preferences and values to the available evidence-based options. Its emergence resulted in a shift away from a predominantly paternalistic model of decision-making.14,15,19,20 Despite being widely studied, routine uptake of SDM in oncology has been challenging, due to factors including variations in model definitions, existing research gaps, clinician-level barriers (eg, hesitancy/uncertainty on how to engage in SDM), and system- and institutional-level obstacles.2124 Thus, there is an opportunity to shift the focus from individual decision-support tools for SDM to a broader decision-making model focused on preference-aligned decision-making that fosters an ongoing collaborative therapeutic alliance between the patient and clinician. Specifically, a PCDM approach encompasses the broader contextual factors that both the patient and the clinician bring to treatment decisions at various time points throughout the disease course.

Patient-Centered Decision-Making

A person-centered orientation throughout the care continuum is fundamental to PCDM. Core to the PCDM model is that the patient and the clinician have shared values and preferences, comprehensively discussed options, and then arrived collaboratively at treatment decisions that are preference-aligned. A PCDM approach elicits the patient’s decisional role preference, desired level of information-sharing, and preferences for treatment to better understand and align with outcomes that matter most to the patient when developing an appropriate and mutually agreed upon treatment plan.2527 Key to PCDM is the clinician sharing a recommendation during the decision-making process that serves to contextualize their understanding of the patients’ knowledge, values, preferences, and goals into the decision at hand. Importantly, this approach encourages the clinician to share their own expertise, experience, and perspective, thus not placing the clinician in a passive position to merely present a myriad of options.

The I-PCDMC discussions highlighted 3 critical components of PCDM that are needed to support preference-aligned treatment decisions (Table 1).15,2530 Additionally, Figure 1 depicts a proposed conceptual model for PCDM, outlining the key components of PCDM. This model could be adapted to any dyad involved in oncology care.

Table 1.

Key Components of Patient-Centered Decision-Making

Table 1.
Figure 1.
Figure 1.

Proposed conceptual model of patient-centered decision-making in metastatic breast cancer care delivery.

Citation: Journal of the National Comprehensive Cancer Network 22, 1; 10.6004/jnccn.2023.7113

Implementing PCDM in Oncology

Taken together, it is imperative to define a set of outcomes by which to assess PCDM effectiveness and scalability within a health care system. Although the PCDM approach has been examined,2528 there remains a paucity of data describing implementation of PCDM, particularly within real-world oncology care delivery. To effectively demonstrate the value of PCDM, it is critical to show precisely how a PCDM approach results in better outcomes for patients. Proximal outcomes for assessing PCDM should be relevant to the interests of key partners (eg, patients, clinicians, caregivers/families, communities, health systems, and payers). Although there exist relevant proximal outcomes (eg, decision quality, satisfaction with decision-making, reduction in decisional conflict and/or regret, side-effect management, cancer treatment outcomes, and adherence) that could be leveraged to support the use of PCDM, challenges arise when considering the measurement of more distal outcomes associated with PCDM, such as quality of life and symptom management. There remains a need for validated measures of PCDM.

Facilitating Implementation of PCDM

To ensure optimal implementation of PCDM in clinical practice, key facilitators of PCDM should be considered. First, infrastructure and systems to support patient and caregiver health literacy (ie, understanding and use of health information) are imperative. Specifically, it is important to ensure that health information and resources are available to support patient comprehension of their condition so that they can make informed treatment decisions, to the extent possible, that are aligned with their preferences and treatment goals. Second, implementing effective PCDM strategies requires fully appreciating the patient’s preferences around how they wish to engage in their health care decisions, their understanding and willingness to participate in the care decision process (activation), and how these preferences may change across time and in relation to disease changes. Third, the health care environment must support the clinician’s facilitation of PCDM across multiple encounters. This includes adequate time, space, and team member support to elicit preferences, the ability to provide a link to psychosocial services and support beyond the face-to-face encounter (eg, psychosocial services), and the flexibility to allow patients and caregivers to digest information, process next steps, and make a treatment decision. Finally, effective implementation of PCDM in clinical practice requires being attentive to biases that exist within the health system itself (eg, structural racism and sexism, implicit bias, authority bias) that may hinder engagement in PCDM.

Call to Action: Recommended Next Steps

The I-PCDMC recommendations have resulted in a “call to action” to examine the critical components of the proposed PCDM conceptual model through community-engaged, patient-centered research into the implementation of PCDM in mBC care delivery. These include the following recommendations:

  1. Identify and examine current PCDM approaches, tools, programs, and interventions (small and large scale) to further develop evidence-informed PCDM care delivery models in mBC.

  2. Highlight effective implementation strategies to support and sustain the uptake of PCDM in mBC treatment and use these to help to bolster and inform evidence-based best practices and guidelines around PCDM in mBC care delivery.

  3. Develop a PCDM measurement strategy by identifying an initial framework for PCDM and outcomes based on the key components of PCDM, including short- and long-term outcomes to best assess the effectiveness of PCDM interventions.

    • • Identify and investigate the role of relevant proximal (direct) and distal (indirect) PCDM outcomes, including consideration of how health literacy, patient activation/engagement, and health equity may impact successful attainment of PCDM or facilitate PCDM implementation.

Conclusions

Incorporating PCDM as a standard approach in mBC care delivery is needed, as this model can improve patient–clinician partnerships by ensuring preference-aligned, goal-concordant care that encompasses the whole person, and can support the selection of outcomes most meaningful to patients living with a currently incurable disease. There remains a substantial gap in understanding how oncology clinicians can optimally employ PCDM across the care continuum, as well as effective measures to assess and document its use in routine clinical practice.

Acknowledgments

The authors would like to thank Jacquelyn W. Chou, MPP, MPL, Natalie Land, MPH, and Richard Murphy, BA (research staff at PRECISIONheor), along with Jill Massey, PharmD, MBA, and Nancy Paynter, MBA, from Gilead Sciences, Inc., for their contributions to this work.

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Disclosures: Dr. Rocque has disclosed receiving grant/research support from Genentech, Daiichi Sankyo, Pfizer, and Armada; serving as a consultant for Pfizer and Gilead Sciences; and meeting support from Gilead Sciences. Dr. Wallner has disclosed serving as a consultant for Gilead Sciences; and receiving honoraria Gilead Sciences. Dr. Bailey has disclosed receiving grant/research support from and serving as a consultant for Gilead Sciences. Ms. Schear has disclosed serving as a consultant for Global Health Solutions and Gilead Sciences; and receiving meeting support from Gilead Sciences. Dr. Gunn has disclosed serving as a consultant for Gilead Sciences. Dr. Wilson has disclosed serving as a consultant for Gilead Sciences. Dr. Freeman has disclosed receiving grant/research support from, being employed by, and owning stock/having an ownership interest in Gilead Sciences. Ms. Buckingham has disclosed receiving grant/research support from, being employed by, and owning stock/having an ownership interest in Gilead Sciences. Dr. May has disclosed serving as a consultant for Gilead Sciences. The remaining authors have disclosed that they have no financial interests, arrangements, affiliations, or commercial interests with the manufacturers of any products discussed in this article or their competitors.

Funding: Financial support for this work was provided by Gilead Sciences Inc.

Correspondence: Trudy Buckingham, MSPH, Gilead Sciences, Inc., 333 Lakeside Drive, Foster City, CA 94404. Email: Trudy.Buckingham@gilead.com
  • Collapse
  • Expand
  • Figure 1.

    Proposed conceptual model of patient-centered decision-making in metastatic breast cancer care delivery.

  • 1.

    Committee on Quality of Health Care in America, Institute of Medicine. Crossing the Quality Chasm: a New Health System for the 21st Century. National Academy Press; 2001.

    • PubMed
    • Search Google Scholar
    • Export Citation
  • 2.

    Brooks GA, Hoverman JR, Colla CH. The Affordable Care Act and cancer care delivery. Cancer J 2017;23:163167.

  • 3.

    Zhao J, Mao Z, Fedewa SA, et al. The Affordable Care Act and access to care across the cancer control continuum: a review at 10 years. CA Cancer J Clin 2020;70:165181.

    • PubMed
    • Search Google Scholar
    • Export Citation
  • 4.

    Mead KH, Wang Y, Cleary S, et al. Defining a patient-centered approach to cancer survivorship care: development of the patient centered survivorship care index (PC-SCI). BMC Health Serv Res 2021;21:1353.

    • PubMed
    • Search Google Scholar
    • Export Citation
  • 5.

    Bourbeau BR, Hagerty K, Dickson N, et al. Practice considerations for participation in the enhancing oncology model. JCO Oncol Pract 2022;18:737741.

  • 6.

    Furlow B. US government releases National Cancer Plan. Lancet Oncol 2023;24:436.

  • 7.

    Gerteis M, Edgman-Levitan S, Walker JD, et al. What patients really want. Health Manage Q 1993;15:26.

  • 8.

    Kuluski K. Relationships and communication—the core components of person-centred care. Health Expect 2020;23:977978.

  • 9.

    Kwame A, Petrucka PM. A literature-based study of patient-centered care and communication in nurse-patient interactions: barriers, facilitators, and the way forward. BMC Nurs 2021;20:158.

    • PubMed
    • Search Google Scholar
    • Export Citation
  • 10.

    Thistlethwaite J, Evans R, Tie RN, et al. Shared decision making and decision aids - a literature review. Aust Fam Physician 2006;35:537540.

  • 11.

    American Cancer Society. Cancer facts & figures: 2022. Accessed June 6, 2023. Available at: https://www.cancer.org/content/dam/cancer-org/research/cancer-facts-and-statistics/annual-cancer-facts-and-figures/2022/2022-cancer-facts-and-figures.pdf

    • PubMed
    • Search Google Scholar
    • Export Citation
  • 12.

    Elkefi S, Asan O. The Impact of patient-centered care on cancer patients’ QOC, self-efficacy, and trust toward doctors: analysis of a national survey. J Patient Exp 2023;10:23743735231151533.

    • PubMed
    • Search Google Scholar
    • Export Citation
  • 13.

    Bomhof-Roordink H, Gärtner FR, Stiggelbout AM, et al. Key components of shared decision making models: a systematic review. BMJ Open 2019;9:e031763.

  • 14.

    Charles C, Whelan T, Gafni A. What do we mean by partnership in making decisions about treatment? BMJ 1999;319:780782.

  • 15.

    Charles C, Gafni A, Whelan T. Shared decision-making in the medical encounter: what does it mean? (or it takes at least two to tango). Soc Sci Med 1997;44:681692.

    • PubMed
    • Search Google Scholar
    • Export Citation
  • 16.

    Lin GA, Fagerlin A. Shared decision making: state of the science. Circ Cardiovasc Qual Outcomes 2014;7:328334.

  • 17.

    Hawley ST, Jagsi R. Shared decision making in cancer care: does one size fit all? JAMA Oncol 2015;1:5859.

  • 18.

    Barry MJ, Edgman-Levitan S. Shared decision making--pinnacle of patient-centered care. N Engl J Med 2012;366:780781.

  • 19.

    Stiggelbout AM, Pieterse AH, De Haes JC. Shared decision making: concepts, evidence, and practice. Patient Educ Couns 2015;98:11721179.

  • 20.

    Godolphin W. Shared decision-making. Healthc Q 2009;12(Suppl):e186190.

  • 21.

    Kane HL, Halpern MT, Squiers LB, et al. Implementing and evaluating shared decision making in oncology practice. CA Cancer J Clin 2014;64:377388.

  • 22.

    Covvey JR, Kamal KM, Gorse EE, et al. Barriers and facilitators to shared decision-making in oncology: a systematic review of the literature. Support Care Cancer 2019;27:16131637.

    • PubMed
    • Search Google Scholar
    • Export Citation
  • 23.

    Zeuner R, Frosch DL, Kuzemchak MD, et al. Physicians’ perceptions of shared decision-making behaviours: a qualitative study demonstrating the continued chasm between aspirations and clinical practice. Health Expect 2015;18:24652476.

    • PubMed
    • Search Google Scholar
    • Export Citation
  • 24.

    Katz SJ, Belkora J, Elwyn G. Shared decision making for treatment of cancer: challenges and opportunities. J Oncol Pract 2014;10:206208.

  • 25.

    Weiner SJ, Schwartz A, Sharma G, et al. Patient-centered decision making and health care outcomes: an observational study. Ann Intern Med 2013;158:573579.

  • 26.

    Fineberg HV. From shared decision making to patient-centered decision making. Isr J Health Policy Res 2012;1:6.

  • 27.

    Verberne WR, Stiggelbout AM, Bos WJW, et al. Asking the right questions: towards a person-centered conception of shared decision-making regarding treatment of advanced chronic kidney disease in older patients. BMC Med Ethics 2022;23:47.

    • PubMed
    • Search Google Scholar
    • Export Citation
  • 28.

    Tonelli MR, Sullivan MD. Person-centred shared decision making. J Eval Clin Pract 2019;25:10571062.

  • 29.

    Weiner SJ. Contextualizing medical decisions to individualize care: lessons from the qualitative sciences. J Gen Intern Med 2004;19:281285.

  • 30.

    Tariman JD, Berry DL, Cochrane B, et al. Physician, patient, and contextual factors affecting treatment decisions in older adults with cancer and models of decision making: a literature review. Oncol Nurs Forum 2012;39:E7083.

    • PubMed
    • Search Google Scholar
    • Export Citation
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