Women's perceptions of their treatment decision-making about breast cancer treatment

doi:10.1016/j.pec.2008.07.015

Patient Education and Counseling

Volume 73, Issue 3, December 2008, Pages 431-436

https://doi.org/10.1016/j.pec.2008.07.015 Get rights and content

Abstract

Objective

There is limited understanding about what treatment decision making (TDM) means to patients. The study objective was to identify any processes or stages of TDM as perceived by women with early stage breast cancer (ESBC).

Methods

Initial consultations with a surgeon or medical oncologist were videotaped. Subsequently, women viewed their consultation using a qualitative approach with video-stimulated recall (VSR) interviews. Interviews were taped, transcribed, and analyzed.

Results

There were 6 surgical and 15 medical oncology (MO) consultations. Most women described TDM as beginning soon after diagnosis and involving several processes including gathering information from informal and formal networks and identifying preferred treatment options before the specialist consultation. Many women wanted more information from their surgeon so they could engage in subsequent TDM with their medical oncologist.

Conclusion

In this study, women with ESBC began TDM soon after diagnosis and used several iterative processes to arrive at a decision about their cancer treatment. VSR interviews can be useful to investigate TDM occurring during the consultation.

Practice implications

Women with ESBC rely on information provided by their surgeons and family physicians to make treatment decisions about surgery and also to prepare them for subsequent discussions with medical oncologists about chemotherapy.

Introduction

Patient involvement in treatment decision making (TDM) is consistent with the ethical and legal principle of informed choice, i.e. disclosure of treatment alternatives [1], [2], [3], [4], [5]. Such involvement responds to the broader principle of patient autonomy and control over treatment decisions that can affect patients’ outcomes such as anxiety, satisfaction and adjustment to their illness. Many decisions in oncology involve evaluating treatment options which vary with respect to their potential benefits and side effects and whose importance needs to be evaluated by the patient. Several studies of TDM in oncology have focused on patients’ preferences for their role in making the treatment decision [6], [7], [8] rather than on patients’ views of broader processes of decision making [9].

There are different ways that TDM can be studied. One way is to explore the roles and processes used by patients and physicians within the medical consultation [10], [11], [12], [13]. For example, Charles et al. described three stages of TDM within the consultation: information exchange, deliberation, and agreement on the treatment to be implemented [12]. A limitation of the within-consultation approach is that TDM processes occurring outside of it may be missed. An alternative method is to examine the TDM process from the perspective of the patient over time. In this approach, the TDM processes used by patients can be explored including encounters with different types of physicians, e.g. surgeons and other specialists as well as interactions that may occur with family and friends. A limitation is that TDM processes that involve the physician and the patient during the actual consultation may be overlooked. Several studies [14], [15], [16] have focused on different aspects of women's TDM related to breast cancer treatment. For example, Pierce [14] identified five empirical indicators of women's decision behaviour while Reaby [15] described the quality and coping patterns of women's TDM. Kenny et al. [16] described women's reasons for their participation or nonparticipation in TDM. More recently Vogel et al. [17] reported that almost half of breast cancer patients changed their TDM preference at least once during the first 6 months of treatment and that patients who preferred a passive decision-making role were significantly more depressed than those who preferred a more active role [18].

Most of the previous studies pertaining to TDM of women with breast cancer have included women making surgical treatment decisions. In two studies [15], [16], there was a long interval between the treatment decision and data collection (1–7 years), making it difficult to know if patients’ recall could have been affected by their subsequent treatment experiences or outcomes. Other than the Charles et al. paper that focused on the patient–physician dyad, we did not locate any studies that described processes or stages of TDM from the perspectives of women with early stage breast cancer (ESBC).

In this study, we attempted to overcome some of the limitations of previous studies. We used a hybrid approach to explore women's perspectives of TDM experiences related to ESBC both over time and within the medical consultation. We explored the perspectives of women considering surgery as well as adjuvant systemic therapy including chemotherapy. The key study objective was to identify any processes or stages of TDM as perceived by women with ESBC. Our study is nested within a larger qualitative study exploring women's perspectives of their involvement in TDM, their views of processes of TDM, and physician facilitators and barriers to women's involvement in TDM.

Section snippets

Settings

All women had an established breast cancer diagnosis and were being seen by one of two surgeons or four medical oncologists participating in this study. Women were seen at a teaching hospital or regional cancer centre in south central Ontario, Canada. Most oncologists routinely used an online risk calculator to determine a patient’ risk of cancer recurrence [19]. A print-out of the patient's risk of recurrence with and without adjuvant therapy was given to the patient. One oncologist routinely

Participant characteristics

The characteristics of participating women are presented in Table 1. Nearly all women were either married or living with a partner. Most women had completed high school and several had completed college or university.

Women's perspectives of their TDM experiences

Six major themes related to TDM are presented below along with quotes by the study women illustrating each perspective. The first four themes reflect women's perceptions of processes or stages of TDM. The last two themes describe important observations women made about their TDM

Discussion

One of the unique aspects of the present study is that we investigated women's perspectives about TDM both inside and outside the formal consultation and included both surgical and adjuvant systemic therapy contexts. Several TDM processes described by women in this study are similar to the stages of TDM in the Charles model [12]. However, our study identified important variations in both when processes occurred and who participated. First, many women described an iterative TDM process that

Conflict of interest statement

None.

Financial disclosure

Mary Ann O’Brien is the recipient of doctoral fellowships from the Canadian Breast Cancer Foundation, Ontario Chapter and the Breast Cancer Research Program, US Department of Defense.

The fellowship funding agencies did not have any involvement in the study design, in the collection, analysis and interpretation of data; in the writing of the manuscript; or in the decision to submit the manuscript for publication.

Acknowledgements

We are grateful to the women and physicians who participated in the study. We wish to thank the two anonymous reviewers for their insightful comments.

Authors’ contributions: Mary Ann O’Brien designed the study, interviewed participants, analyzed data and drafted the original manuscript and made revisions to it.

Tim Whelan, Cathy Charles, Peter Ellis, and Amiram Gafni contributed to the study design, data interpretation, critically revised the article and gave final approval of the submitted

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View all citing articles on Scopus

View full text

Women's perceptions of their treatment decision-making about breast cancer treatment

Abstract

Objective

Methods

Results

Conclusion

Practice implications

Introduction

Section snippets

Settings

Participant characteristics

Women's perspectives of their TDM experiences

Discussion

Conflict of interest statement

Financial disclosure

Acknowledgements

Soc Sci Med

Soc Sci Med

Patient Educ Couns

Soc Sci Med

Soc Sci Med

Supreme Court reaffirms landmark informed-consent ruling in chickenpox case

Can Med Assoc J

Bioethics for clinicians. 2. Disclosure

Can Med Assoc J

Influence of the law on risk and informed consent

Br Med J

Commentary: informed consent and risk communication in France

Br Med J

Consent to treatment: a guide to the Act

Information needs and decisional preferences in women with breast cancer

J Am Med Assoc

Treatment decision making in early-stage breast cancer: should surgeon's match patients’ desired level of involvement?

J Clin Oncol

Inside the black box of shared decision making: distinguishing between the process of involvement and who makes the decision

Health Expect

Doing nothing is no choice: lay constructions of treatment decision-making among women with early-stage breast cancer

Sociol Health Illn

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Cancer Nurs