Effect of a decision aid with patient narratives in reducing decisional conflict in choice for surgery among early-stage breast cancer patients: A three-arm randomized controlled trial

https://doi.org/10.1016/j.pec.2016.09.011Get rights and content

Highlights

  • Many decision aids (DAs) include patient narratives of others’ experiences.

  • It is not clear whether patient narratives can increase the effectiveness of DAs.

  • We examined effects of a DA with narratives in breast cancer surgery.

  • The DAs with/without patient narratives can reduce postoperative decisional conflict.

  • Differential impact of the DAs with/without patient narratives is discussed.

Abstract

Objective

We aimed to evaluate the effect of a decision aid (DA) with patient narratives on decisional conflict in surgery choice for Japanese women with early-stage breast cancer.

Methods

Two hundred ten women with early-stage breast cancer were randomly assigned to an intervention or control group. Groups 1 and 2 received standard information and a DA, with or without patient narratives, and Group 3 received standard information (control) before surgery choice. At baseline, post-intervention (Time 2), and 1 month after surgery (Time 3), we evaluated decisional conflict as the primary outcome using a decisional conflict scale (DCS). Sidak corrections for multiple comparisons in analysis of covariate were used to compare Time 2 and Time 3 DCS mean scores between each pair of groups.

Results

At Time 3, decisional conflict was significantly reduced for Group 1 vs control (P = 0.021, Cohen’s d  = 0.26) and Group 2 vs control (P = 0.008, Cohen’s d = 0.40).

Conclusion

The DAs with and without patient narratives are equivalently effective at reducing postoperative decisional conflict in Japanese women with early-stage breast cancer.

Practice implications

The DAs with and without patient narratives can be used in clinical practice for women with early-stage breast cancer.

Introduction

Patients with cancer have become increasingly involved in treatment decision making [1]. Choice about breast cancer surgery is one of the most widespread preference-sensitive decisions made by women with early-stage breast cancer [1]. Randomized trials have demonstrated equivalent survival rates for breast-conserving therapy plus radiation therapy versus mastectomy [2]. Furthermore, these decisions greatly affect long-term quality of life after surgery. Therefore, there is no universal “best” choice.

There is high quality evidence that patient decision aids (DAs) help patients to be more knowledgeable about options and reduce decisional conflict related to feeling uninformed and unclear about personal values compared with usual care [3]. Patient narratives are increasingly used to provide health information to patients and the public [4]. Many publicly available DAs include first-person narratives of others’ experiences with decision making [5]. However, it is not yet clear whether patient narratives can increase the effectiveness of DAs [4], [5], [6], [7].

Researchers have focused on problems of using narratives in the context of risk communication [8], [9]; conversely, in the context of preference-sensitive health care decisions, researchers have focused on the benefits of using narratives. In the real world, individuals faced with new or unfamiliar health concerns or treatments often seek information about how other people have experienced these treatments [10], [11]. Social cognitive theory suggests that perceiving as people similar to oneself can strengthen self-efficacy for carrying out behaviors [12]. Patient narratives assist in recognizing decisions that need consideration, identifying and appraising options, and making selections [13]. Patient narratives may make counterfactual feelings more tangible and thus help individuals to “construct their preference” [14].

Because surgical treatment options available for early-stage breast cancer have equivalent survival rates, women’s surgical treatment choice ultimately depends on their own preferences and lifestyles [15]. Women must clarify their own values by appraising benefits and harms and weighing attributes that are personally important to them when making decisions [16]. In hypothetical breast cancer surgery treatment decisions, higher levels of electronic health literacy were associated with increased decisional confidence and greater perceptions of trustworthiness and credibility of the decision in the video DA including patient narratives group, but not the control video group. However, a limitation of this study was that it assessed hypothetical treatment decisions that may not be generalizable to “real” treatment decisions [17]. Although the effects of DAs on breast cancer surgery treatment choice have been evaluated [18], [19], [20], [21], [22], to our knowledge, no study has determined whether a DA with patient narratives is more effective in reducing decisional conflict for women with early-stage breast cancer.

Japanese women with breast cancer reportedly have higher decisional conflict scores than patients in Europe and the United States, and a mean score on subscale “Uncertainty” was a factor encouraging decisional conflict [23]. Therefore, the aim of this study was to develop a DA with patient narratives and determine whether a DA with patient narratives is more effective than one without patient narratives for Japanese women with early-stage breast cancer who are choosing between surgery options.

Section snippets

Study design and participants

This was a single-center three-arm parallel randomized controlled trial. Inclusion criteria were as follows: Japanese women newly diagnosed with early-stage breast cancer, older than 20 years, with no cancer history and scheduled for breast surgery as initial treatment. Potential subjects were excluded if they had been offered neoadjuvant chemotherapy, were pregnant, were non-Japanese speakers, or had cognitive impairment, recurrent or metastatic breast cancer, or BRCA 1/2 mutation. Exclusion

Study flow and patient characteristics

Between August 2014 and April 2015, 296 women who met the eligibility criteria were invited to participate in the trial (Fig. 2). After excluding women who did not meet inclusion criteria or refused to participate (n = 86), 210 women were randomly assigned to the intervention or control group. Data of 174 participants consisting of 58 women in the DA with patient narratives group (dropout rate 17.1%), 61 women in the DA with patient narratives group (dropout rate 12.9%), and 55 women in the

Discussion

In this study, we assessed the effects of DAs with or without patient narratives on women’s decision making regarding breast cancer surgery. Women who received DAs with and without patient narratives reported significantly less decisional conflict 1 month after surgery than women receiving usual care. Our patients’ total scores for decisional conflict 1 month after surgery are consistent with those cited in a Cochrane review of DAs [3].

Women in the DA with patient narratives group had

Statement

We confirm all personal identifiers have been removed or disguised so the persons described are not identifiable and cannot be identified through the details of their stories.

Author contributions

All authors contributed to the design and development of the project. W.O. was responsible for the analysis; K.N. contributed to the analysis. W.O. was primarily responsible for the manuscript with contributions from all authors. All authors have read and approved the final manuscript.

Funding

This work was supported by the Japan Society for the Promotion of Science Grants-in-Aid for Scientific Research (KAKENHI) Grant Number JP25670928.

Conflict of interest

The authors declare that they have no competing interests.

Acknowledgements

We would like to acknowledge the insight and expertise provided by Dr. Hideko Yamauchi, Nana Takeda, Keiko Hosokawa, and Hisako Kanai, which greatly assisted the research. We would also like to acknowledge the important contributions of the participants.

References (44)

  • H.L. Bekker et al.

    Do personal stories make patient decision aids more effective? A critical review of theory and evidence

    BMC Med. Inf. Decis. Mak.

    (2013)
  • F.J. Fowler et al.

    The Power of the Patient Voice: Using Interviews, Narratives and Testimonials to Assist in Medical Decision Making

    (2016)
  • L.J. Trevena et al.

    Presenting quantitative information about decision outcomes: a risk communication primer for patient decision aid developers

    BMC Med. Inf. Decis. Mak.

    (2013)
  • S. Ziebland et al.

    How patients’ experiences contribute to decision making: illustrations from DIPEx (personal experiences of health and illness)

    J. Nurs. Manag.

    (2008)
  • A. Bandura

    Health promotion from the perspective of social cognitive theory

    Psychol. Health

    (1998)
  • V.A. Entwisle et al.

    How information about other people's personal experiences can help with healthcare decision-making: a qualitative study

    Patient Educ. Couns.

    (2011)
  • G. Elwyn et al.

    Investing in deliberation: a definition and classification of decision support interventions for people facing difficult health decisions

    Med. Decis. Mak.

    (2010)
  • J. Chew

    Different Stories Play Difference Roles in Patients’ Health Decision-making, MU Researcher Says, Narratives About Treatment Process and Experiences Inform Patients Without Persuading

    (2013)
  • A. Hilary et al.

    Values clarification

  • V.A. Shaffer et al.

    The effect of narrative information in a publicly available patient decision aid for early-stage breast cancer

    Health Comm.

    (2014)
  • V. Goel et al.

    Randomized trial of a patient decision aid for choice of surgical treatment for breast cancer

    Med. Decis. Mak.

    (2001)
  • T. Whelan et al.

    Effect of a decision aid on knowledge and treatment decision making for breast cancer surgery: a randomized trial

    JAMA

    (2004)
  • Cited by (29)

    • A Decision Aid for Postpartum Adolescent Family Planning: A Quasi-Experimental Study in Tanzania

      2023, International Journal of Environmental Research and Public Health
    View all citing articles on Scopus
    View full text