Improving value-concordant shared decision making through the use of patient decision aids in breast cancer: a narrative review
Review Article

Improving value-concordant shared decision making through the use of patient decision aids in breast cancer: a narrative review

Micaela K. Roy1, Madeline G. Higgins2, Monica Adams3,4, Sarah Tevis2

1School of Medicine, University of Colorado Anschutz Medical Campus, Aurora, CO, USA; 2Department of Surgery, University of Colorado Anschutz Medical Campus, Aurora, CO, USA; 3Adult and Child Center for Outcomes Research & Delivery Science (ACCORDS), University of Colorado Anschutz Medical Campus, Aurora, CO, USA; 4Department of Psychological, Health, and Learning Sciences, University of Houston, Houston, TX, USA

Contributions: (I) Conception and design: All authors; (II) Administrative support: S Tevis; (III) Provision of study materials or patients: None; (IV) Collection and assembly of data: MK Roy, MG Higgins; (V) Data analysis and interpretation: All authors; (VI) Manuscript writing: All authors; (VII) Final approval of manuscript: All authors.

Correspondence to: Sarah Tevis, MD. Department of Surgery, University of Colorado Anschutz Medical Campus, 12631 E 17th Ave, #6117, Aurora, CO 80045, USA. Email: sarah.tevis@cuanschutz.edu.

Background and Objective: Patient decision aids (pDAs) are evidence-based tools that aid patients in making informed, value-based choices about their medical treatment. In breast cancer surgery, pDAs help patients weigh the physical and emotional consequences between treatment options e.g. between breast conserving surgery (BCS) and mastectomy. Despite their utility, pDAs are not widely used. In this narrative review, we aim to increase pDA awareness in breast cancer surgical care by discussing outcomes of pDAs, best practices for developing and adapting pDAs, and challenges of pDA implementation.

Methods: We performed a database search and literature review of studies that discuss the use of pDAs in breast cancer surgical treatment published from 1994–2024.

Key Content and Findings: Decision aids are effective in facilitating shared decision making in the medical setting. In breast cancer surgical care, pDAs have been shown to increase patient knowledge, improve patient satisfaction with decision, lower pain scores, and improve general health and functioning after surgery. Decision aids have varying effects on the choice of BCS versus mastectomy. Effective pDAs for breast cancer surgery are developed systematically using defined standards and are iteratively tested to ensure they are usable in diverse populations. Various barriers impede pDA use in breast cancer surgical care. These barriers include patient reluctance, provider reluctance, provider lack of knowledge, short appointment times, and limited support for providers. Potential strategies to overcome these barriers include provider education, increased physician buy-in, and the utilization of multidisciplinary teams. Future pDA development for breast cancer surgical care should continue to prioritize patient and provider feedback and include patient reported outcomes and quality of life measures.

Conclusions: As breast cancer prognosis improves and patient survival increases, pDAs will continue to be essential in helping patients decide what treatments align best with their long-term values and goals.

Keywords: Breast cancer; patient decision aids (pDAs); breast conserving therapy; mastectomy

Received: 10 July 2024; Accepted: 12 October 2024; Published online: 10 December 2024.

doi: 10.21037/abs-24-33

Introduction

Background

Patient decision aids (pDAs) are essential tools that support shared decision making (SDM) between patient and provider in medical care. These evidence-based tools aid patients in making value-based choices about their medical treatment and differ from educational materials in their explicit focus on making a decision (1). In breast cancer, pDAs can help patients weigh significant physical and emotional consequences between multiple, equally efficacious treatment options (2). pDAs are especially critical in breast cancer surgery and can assist in the decision between breast conserving surgery (BCS) and mastectomy.

Rationale and knowledge gap

Since the late 1990s, there have been numerous published reports of pDAs in breast cancer (3). Despite the abundance of pDAs, they remain an under-utilized resource for many patients (4,5). One potential reason for their limited use is low provider awareness of pDAs and their utility in breast cancer care (6). Other potential reasons include variability in the content and quality among available pDAs (7).

Objective

Therefore, we aim to increase pDA awareness by providing a narrative discussion of pDAs in the surgical treatment of breast cancer. We consider the best practices for developing and adapting pDAs in breast cancer surgery and report outcomes of pDA use. Furthermore, we review the challenges of pDA implementation in breast cancer surgical care and discuss the need for incorporating patient reported outcomes (PROs) and quality of life (QoL) measures into pDAs in the future. We present this article in accordance with the Narrative Review reporting checklist (available at https://abs.amegroups.com/article/view/10.21037/abs-24-33/rc).

Methods

The literature used in this narrative review was compiled via a database search in English of PubMed, Google Scholar, and the Ottawa Hospital Inventory of Patient Decision Aids, and was supplemented by a general Google search of published citations. We included all relevant publications including randomized controlled trials, retrospective studies, cohort studies, and systematic reviews, that discussed various decision aids (Table 1). We included studies published from 1994–2024. Search terms included ‘decision aids’, ‘breast cancer’, ‘surgery’, ‘mastectomy’, ‘BCS’, ‘lumpectomy’, ‘implementation’, ‘decisional regret’, ‘decisional conflict scale’, ‘outcomes’, ‘challenges’, ‘development’, ‘adaptation’, ‘medicine’, ‘history’, and combinations of these terms. Studies that discussed the use of decision aids in breast cancer surgical treatment were included; seminal decision aid papers from other areas of medicine were sparingly selected to frame the discussion when necessary. Articles were initially selected by two authors (M.K.R. and M.G.H.) and agreed upon by all co-authors. The search strategy is outlined in Table 2.

Table 1

Breast cancer patient decision aids included in review

Name Decision Citation
Option Grid Lumpectomy with radiation vs. mastectomy Alam et al., 2016 (8); Durand et al., 2021 (9)
Early Stage Breast Cancer - Choosing Your Surgery Breast conserving surgery vs. mastectomy Albrecht et al., 2011 (10)
Untitled Radiotherapy vs. no radiotherapy for breast cancer Raphael Daniela et al., 2021 (11)
Picture Option Grid Lumpectomy with radiation vs. mastectomy Durand et al., 2021 (9)
Untitled Breast conserving surgery vs. mastectomy Goel et al., 2001 (12)
A Patchwork of Life: One Woman’s Story for Making Breast Cancer Treatment Decisions Breast conserving surgery vs. mastectomy Jibaja-Weiss et al., 2006 (13); Jibaja-Weiss et al., 2011 (14)
Navya Patient Preference Tool (PPT) Breast conserving surgery vs. mastectomy Joshi et al., 2023 (15)
Untitled Breast conserving surgery vs. mastectomy Lin et al., 2022 (16)
Interactive Breast Cancer Compact Disc Read Only Memory (CDROM) Breast conserving surgery vs. mastectomy Molenaar et al., 2001 (17)
Untitled Breast conserving surgery, mastectomy, or mastectomy with reconstruction Osaka and Nakayama, 2017 (18)
Untitled Breast conserving therapy vs. mastectomy Savelberg et al., 2021 (19)
The Decision Board Lumpectomy vs. mastectomy Whelan et al., 1999 (3); Whelan et al., 2004 (20)
Breast Cancer Decision Support Intervention (DESI) Surgery and adjuvant endocrine therapy vs. primary endocrine therapy Wyld et al., 2021 (21)
Breast Cancer Decision Support Intervention (DESI) Adjuvant chemotherapy vs. no chemotherapy Wyld et al., 2021 (21)

Table 2

The search strategy summary

Items Specification
Date of search March 8–13, 2024, May 25, 2024
Databases and other sources searched PubMed, Google Scholar, Ottawa Hospital Inventory of Patient Decision Aids
Search terms used Search terms included ‘decision aids’, ‘breast cancer’, ‘surgery’, ‘mastectomy’, ‘BCS’, ‘lumpectomy’, ‘implementation’, ‘decisional regret’, ‘decisional conflict scale’, ‘outcomes’, ‘challenges’, ‘development’, ‘adaptation’, ‘medicine’, ‘history’, and a combination of these terms
Timeframe 1994–2024
Inclusion criteria Studies discussing patient decision aids in breast cancer surgery were included
Selection process M.K.R. and M.G.H. conducted the initial searches; final consensus was obtained by all co-authors

Decision aids facilitate effective care

With advances in biomedical technology, the number of appropriate medical treatment options for breast cancer treatment has burgeoned. Subsequently, choosing a plan of care has grown more complex. Many healthcare decisions lack a single ‘best’ answer due to tradeoffs between risks and benefits or insufficient evidence about outcomes. SDM between patient and provider is regarded as a cornerstone of patient-centered care and is especially essential when patients are weighing multiple medically appropriate treatments with lasting impacts on QoL (22). To effectively engage in SDM, patients must understand a range of options, outcomes, risks, and benefits that have both clinical and personal implications. However, patient understanding is limited by various factors including health literacy and the subjective nature of provider discussions. Additionally, SDM requires providers to elicit patient preferences regarding their treatment options and incorporate patient goals and values into decisions (23,24). Thus, a more standardized method of patient education is desirable to deliver high quality medical care.

The International Patient Decision Aids Standards (IPDAS) Collaboration defines pDAs as validated tools to engage patients in health care decision making and help patients understand and communicate the effects of their personal values on these decisions (25). To be effective, pDAs must make explicit the decision under consideration, provide unbiased information, and call attention to the value sensitive nature of a decision in a clear and user-friendly manner (26).

Decision aids are critical in breast cancer surgical treatment

Many breast cancer patients with early-stage cancer may consider mastectomy versus BCS. BCS consists of lumpectomy with adjuvant radiation and is a less invasive alternative to mastectomy with at least equivalent oncologic outcomes and survival (27). In fact, various observational meta-analyses suggest that BCS may carry a higher survival rate than mastectomy for patients with early-stage disease (28). Despite this, many patients who are candidates for BCS choose mastectomy with evidence of patient values driving their decision making (29). Previous research has shown that patients who choose mastectomy do so to mitigate future worry of cancer recurrence, to avoid radiation or future screening, or due to anecdotal evidence of unsuccessful lumpectomy that required conversion to mastectomy (30-32). Additionally, it is well-known that breast cancer treatment significantly impacts QoL through physical, psychosocial (including fear of cancer recurrence), and sexual side effects (33-36). As breast cancer treatment advances and mortality continues to improve (37), the impact of treatment on QoL has become an essential component to breast cancer care, increasing the importance of SDM and the utility of pDAs.

pDAs have been used for decades to assist in the value-based decision surrounding early breast cancer surgery, and have taken the shape of booklets, computer or web-based programs, and videos (2,7,38-40). The impacts of breast cancer surgical pDAs vary widely between studies and are assessed using several different outcomes. Common outcomes focus on knowledge acquisition, decisional characteristics, patient satisfaction, impact on anxiety and depression, and treatment decision (Table 3) (1). Knowledge is typically scored with information recall surveys or quizzes on the surgical outcomes presented in the pDA. Decisional characteristics used as outcomes include decisional conflict scores, comfort or preparedness for decision making, and decisional regret (12,16). Measures of satisfaction generally include satisfaction with the pDA itself, satisfaction with the decision-making process, and satisfaction with the information provided (9,17,18,20,41,42). pDA impact on anxiety or depression has also been studied. Finally, the effect on patient choice between BCS and mastectomy, with and without reconstruction, has been studied (3,14,20).

Table 3

Common outcomes found in patient decision aid research in breast cancer surgical care

Outcome Description
Final treatment decision Breast conserving surgery or mastectomy
Knowledge of options Information recall
Decisional conflict Decisional conflict score
Decisional regret Decisional regret score
Patient satisfaction Satisfaction with decision aid and decision-making process
Quality of life General health, physical functioning, pain

Overall, pDAs have consistently been shown to increase patient knowledge (21,43) and improve patient satisfaction with decisions after surgery (9,17,18,20,41,42). In regard to decisional conflict and regret, the use of pDAs has been demonstrated to either have no effect (12,16) or decrease decisional conflict (15,18) and regret (9). Furthermore, pDAs for breast cancer surgery have been shown to lower pain scores and improve general health and functioning after surgery (17). Interestingly, the effect of pDAs on treatment decision varies with one leading to increased rates of BCS (43) while others have led to increased rates of mastectomy (3,14,20). Conversely, one pDA developed by Molenaar et al., did not have an effect on treatment decision (17). A possible explanation for these differences is that research on breast cancer surgery pDAs spans decades, and their effects on treatment choice may be impacted by shifting clinical consensus over time. Alternatively, this variability may reflect the ways in which information is presented in each pDA, the different patient populations in each study, or the differences in provider recommendations between study sites.

Although numerous pDAs have been developed for deciding between BCS and mastectomy, the variability in outcomes and treatment decisions calls into question the balance of information within the pDAs including the presence of bias towards one treatment decision over the other. Systematic reviews on pDAs for BCS versus mastectomy have described that current pDAs have inconsistent quality with many failing to comply with the IPDAS (7,25,38,39). The inconsistency of current pDAs for BCS versus mastectomy suggests a need for a better understanding of what makes a pDA effective and how to develop impactful decision support interventions for patients.

Effective pDAs for breast cancer surgery are systematically developed and adapted

pDAs for breast cancer surgery must be systematically developed to successfully inform patients and aid in their decision making to ensure their effective use (44,45). The IPDAS has extensively described quality standards for effective pDAs including model processes for their development with an emphasis on three branches of iterative pDA development: (I) understanding the user, (II) developing and refining the pDA, and (III) assessing the effectiveness of the pDA (46). Recent updates to the IPDAS highlight user-centered designs and suggest that increasing patient and provider involvement in the development may yield a more effective product (44). Additionally, the DEVELOPTOOLS checklist has been created to enhance alignment with the IPDAS (47). The Ottawa Decision Support Framework (ODSF) also informs systematic decision aid development by describing the decisional needs of the patient including inadequate knowledge, unclear values, and decisional conflict, and proposing decision support solutions that may facilitate informed, value-based choices (47). Both IPDAS and ODSF principles are essential in the systematic development of pDAs and should be applied in the development of pDAs for breast cancer surgical care.

Despite these frameworks and standards, several additional challenges exist in developing breast cancer surgical pDAs that are effective for all patients. Studies in breast cancer surgical care have shown that patients with lower socioeconomic status are less involved in SDM, are less satisfied with their decision, and have higher decisional regret (9). Few pDAs are tailored to socially disadvantaged communities as their development is complicated by literacy, education, and social determinants of health (48). Additional outreach may be necessary to involve disadvantaged communities in pDA development (or adaptation of existing pDAs); ultimately, this aligns with the IPDAS emphasis on understanding the pDA user (49). Despite these challenges, pDAs have the potential to provide low-literacy patients with information more effectively than pamphlets or handouts by using simple language and images, and visual statistical displays (8,13,14). Generally, successful adaptation of pDAs, especially for cross-cultural or cross-language use, requires iterative and time-intensive development to achieve adequate acceptance by physicians and patients (10,50).

Implementing pDAs in breast cancer care is challenging

After pDAs for breast cancer surgery are effectively developed and adapted, they may be implemented in various clinical settings. Although pDAs have been shown to improve patient-provider communication, the quality of the decision-making process, and patient decisional conflict, pDAs are not widely used in surgical practice (51). The limited use of pDAs suggests that there are impediments to pDA implementation. These barriers include patient factors, structural-specific factors, and provider factors that impact pDA use (52). One patient factor that impedes pDA implementation is patients’ reluctance to use pDAs due to fear that pDAs will shift the onus of decision making onto them (53). Another example is the lack of availability and usability of pDAs for diverse patient populations (54). Structural barriers including limited appointment time, scheduling difficulties, organizational priorities, and a lack of system support for providers also affect pDA implementation (55). Finally, provider-specific barriers affect pDA implementation through lack of provider knowledge of pDAs (51). Some providers are also reluctant to use pDAs and report feeling that their communication skills are sufficient and do not need to be accompanied by a pDA (51).

Studies have demonstrated that increased physician confidence in pDAs may help overcome barriers to pDA implementation (11). Additionally, educating providers about the demonstrated effectiveness of pDAs on SDM could increase physician buy-in. Other studies suggest that utilizing a multidisciplinary team that involves nurses, social workers, and patients, is integral to successful pDA implementation and use (19,56).

Future pDAs should incorporate PROs and generalize to diverse communities

pDAs will continue to be critical in SDM with continued improvements in breast cancer care, increased treatment options, and growing numbers of breast cancer survivors. pDAs for deciding between BCS and mastectomy should continue to be validated and adapted for diverse patient populations. These adaptations should focus on marginalized groups that are already disadvantaged in SDM. For example, non-English speakers could benefit significantly from pDAs that are culturally appropriate and provided in their native language. Moreover, pDA development should continue to prioritize patient and provider feedback through user-centered design. One future possibility to improve the patient-centered design of pDAs would be the inclusion of PROs. Currently, pDAs provide patients with clinical outcomes (i.e., mortality, recurrence, etc.), but do not display information on how BCS or mastectomy will make them feel. It is known that patients’ have poor “affective forecasting” and make errors when predicting how they will feel when given differing future outcomes (57). In breast cancer surgery, studies on patients’ ability to estimate QoL after mastectomy are conflicting, with one study suggesting that patients overestimate QoL, and another suggesting underestimation (58,59). Given the wide variability in QoL after BCS or mastectomy and the inability of patients to consistently predict future satisfaction, incorporating PROs and long-term QoL measures into pDAs is essential to provide patients with the information necessary to make this value-based decision.

Conclusions

In breast cancer surgical care, pDAs can play a key role in facilitating high-stakes, value-based decisions with lasting physical and emotional impacts. pDAs for breast cancer care should be developed with a user-centered design and iteratively tested with diverse communities before implementation. Future pDAs should incorporate PRO and long-term QoL outcomes to assist patients in making decisions that align with their goals and values. Finally, successful implementation of pDAs requires continued investment from providers, multidisciplinary breast cancer care teams, and organizations.

Acknowledgments

None.

Footnote

Reporting Checklist: The authors have completed the Narrative Review reporting checklist. Available at https://abs.amegroups.com/article/view/10.21037/abs-24-33/rc

Peer Review File: Available at https://abs.amegroups.com/article/view/10.21037/abs-24-33/prf

Funding: None.

Conflicts of Interest: All authors have completed the ICMJE uniform disclosure form (available at https://abs.amegroups.com/article/view/10.21037/abs-24-33/coif). The authors have no conflicts of interest to declare.

Ethical Statement: The authors are accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved.

Open Access Statement: This is an Open Access article distributed in accordance with the Creative Commons Attribution-NonCommercial-NoDerivs 4.0 International License (CC BY-NC-ND 4.0), which permits the non-commercial replication and distribution of the article with the strict proviso that no changes or edits are made and the original work is properly cited (including links to both the formal publication through the relevant DOI and the license). See: https://creativecommons.org/licenses/by-nc-nd/4.0/.

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doi: 10.21037/abs-24-33
Cite this article as: Roy MK, Higgins MG, Adams M, Tevis S. Improving value-concordant shared decision making through the use of patient decision aids in breast cancer: a narrative review. Ann Breast Surg 2025;9:4.

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