Exploring reasons for overuse of contralateral prophylactic mastectomy in Canada

Original Article


Exploring reasons for overuse of contralateral prophylactic mastectomy in Canada


J.E. Squires, RN PhD*, S.N. Simard, RN MSc, S. Asad, MSc, D. Stacey, RN PhD*, I.D. Graham, PhD§, M. Coughlin, RN, MNSc, M. Clemons, MB MD**,#||, J.M. Grimshaw, MB PhD**, J. Zhang, MD PhD††, J.M. Caudrelier, MD‡‡, A. Arnaout, MD MSc||§§



doi: http://dx.doi.org/10.3747/co.26.4951


ABSTRACT

Background

Contralateral prophylactic mastectomy (cpm) in women with known unilateral breast cancer (bca) has been increasing despite the lack of supportive evidence. The purpose of the present study was to identify the determinants of cpm in women with unilateral bca.

Methods

This qualitative descriptive study used semi-structured interviews informed by the Theoretical Domains Framework. We interviewed 74 key informants (surgical oncologists, plastic surgeons, medical oncologists, radiation oncologists, nurses, women with bca) across Canada. Interviews were analyzed using thematic analysis and an analysis for shared and discipline-specific beliefs.

Results

In total, 58 factors influencing the use of cpm were identified: 26 factors shared by various health care professional groups, 15 discipline-specific factors (identified by a single health care professional group), and 17 factors shared by women with unilateral bca. Health care professionals identified more factors discouraging the use of cpm (n = 26) than encouraging its use (n = 15); women with bca identified more factors encouraging use of cpm (n = 12) than discouraging its use (n = 5). The factor most commonly identified by health care professionals that encouraged cpm was lack of awareness of existing evidence or guidelines for the appropriate use of cpm (n = 44, 75%). For women with bca, the factor most likely influencing their decision for cpm was wanting a better esthetic outcome (n = 14, 93%).

Conclusions

Multiple factors discouraging and encouraging the use of cpm in unilateral bca were identified. Those factors identify potential individual, team, organization, and system targets for behaviour change interventions to reduce cpm.

KEYWORDS: Contralateral prophylactic mastectomy, breast cancer, behaviour change, implementation, knowledge translation

BACKGROUND

Contralateral prophylactic mastectomy (cpm)—removal of the noncancerous breast in a woman with known unilateral breast cancer (bca)—is a growing challenge in North America. Outside of women who are at high risk for bilateral bca (for example, carriers of gene mutations), who constitute a minority of patients with bca (5%–10%)14, the risk of contralateral bca in women with known unilateral disease is low (4%–8% in the woman’s entire lifetime)5,6. Given that risk level, cpm in most women with unilateral bca does not prolong survival4. Furthermore, complications after cpm occur in 15%–20% of cases7. They can include medical complications (wound, infectious, cardiorespiratory, neurologic, and thromboembolic complications)8,9 and psychological harms (poor cosmetic outcomes10, lessened feelings of sexuality10, depression11). As a result, evidence-based guidelines “strongly discourage” the routine use of cpm in most women with unilateral bca12. Position statements from the Society of Surgical Oncology13, the U.S. Preventive Services Task Force14, and a Canadian national expert panel15 provide similar guidance. Despite the recommendations, rates of cpm continue to rise internationally7,1620.

There is little understanding of why cpm rates are increasing, especially within the Canadian and American contexts. Covelli and colleagues21,22 conducted interviews with surgeons and patients. In those studies, 45 surgeons from across Ontario and the United States identified access to breast magnetic resonance imaging, breast reconstruction, surgeon preference, and patient choice as the main contributing factors. The 29 women with bca who were interviewed identified fear of bca recurrence as their main contributing factor21,22. Although those studies shed some light on the reasons for increased rates of cpm, they are limited by the type and number of factors identified and the minimal groups and regions sampled. To develop sustainable efforts to reduce inappropriate use of cpm, it is important to establish the determinants of cpm from the perspectives of multiple stakeholders in different regions. The purpose of the present study was therefore to use state-of-the-art approaches in implementation science to identify the determinants of cpm in women with early-stage unilateral bca.

METHODS

Study Design

This qualitative descriptive study, approved by the Ottawa Health Science Network Research Ethics Board, was conducted using semi-structured interviews with physician specialities (general surgery, plastic surgery, medical and radiation oncology), nurses, and women with early-stage bca. The Theoretical Domains Framework (tdf) informed the development of the semi-structured interview guides and the subsequent analysis. The tdf is a behaviour change framework comprising 14 theoretical domains derived from 33 health and social psychology theories that explain health-related behavior23,24.

Participants

Lists of eligible participants within each physician speciality were compiled by the multidisciplinary research team. Registered nurses were recruited from bca centres across Canada. A purposive and stratified [by 5 health care professional (hcp) groups and 4 regions] sampling strategy, augmented with snowball sampling, was used to recruit hcps. Interviews within the 5 hcp groups were conducted until data saturation was achieved. Across all regions in Canada, women (patients) who were within 1 year of their surgical treatment for unilateral bca were also eligible to participate. Purposive sampling was used to recruit women who had and had not undergone cpm. Women were recruited using multifaceted social media approaches, postings through cancer support groups, and snowball sampling.

Data Collection and Analysis

Table I presents an example interview question for each of the 14 tdf domains. Interviews (conducted by telephone between July 2015 and July 2016) were digitally recorded, transcribed verbatim, and anonymized. Data were managed in the NVivo software application (version 10: QSR International, Melbourne, Australia). Data were first analyzed separately for each key informant group and then synthesized across groups. The data were analyzed using thematic content analysis25, which was conducted in 6 systematic steps. First, two team members independently coded the transcripts into the 14 tdf domains. Second, specific beliefs were generated for each utterance (coded interview quote) in each tdf domain. “Specific belief” refers to a collection of participant responses with a similar premise that suggests a problem or influence on behaviour (or both)26,27, in this case about recommending or undergoing cpm or discouraging its use. After generation of the specific-belief statements, similar statements were merged. Third, themes were generated from the merged belief statements, allowing for recognition of similarities and differences between the key informant groups. Fourth, the themes were grouped deductively into 1 of 4 broad categories of determinants:

  • ■ Individual determinant—an individual’s knowledge, comfort level, intentions, and routine practices

  • ■ Influences from others determinant—hcp and patient and family influences

  • ■ Organizational determinant—organizational structure and resource forces

  • ■ System determinant—broader health care system structures and processes

TABLE I Sample interview questions using the Theoretical Domains Framework

 

Fifth, each theme was classified as a factor discouraging cpm use (reducing cpm in unilateral bca) or encouraging its use (contributing to the practice of cpm in unilateral bca). Sixth, themes were examined in relation to whether they were shared across key informant groups (shared beliefs) or within a key informant group (discipline-specific beliefs).

RESULTS

Participant Characteristics

The 74 participants interviewed included 59 hcps (16 surgical oncologists, 15 plastic surgeons, 11 medical oncologists, 11 radiation oncologists, 6 nurses) and 15 women with bca. Table II summarizes the characteristics of the participants. Data saturation (defined as no new themes emerging in the last 3 interviews within each group) was achieved within each hcp group and within the patient group.

TABLE II Participant characteristics

 

Relevant Theoretical Domains

All 14 tdf domains were relevant to the practice of cpm. In total, 58 themes reflecting determinants of cpm were identified: 26 being shared across the hcps, 15 being discipline-specific, and 17 being expressed by women with bca. Health care professionals identified more discouraging (n = 26) than encouraging factors (n = 15); women with bca identified more encouraging (n = 12) than discouraging factors (n = 5).

HCP Interviews

Shared Themes

Table III summarizes the 26 determinants (16 discouraging and 10 encouraging factors) that were shared across hcp groups, with illustrative quotes. Most factors reflected individual-level determinants (n = 19, 73%), followed by influences from others determinants (n = 5, 19%), organizational determinants (n = 1, 4%), and system determinants (n = 1, 4%). As mentioned by hcp groups (with a frequency of greater than 70%), these 3 factors most frequently discouraged use of cpm:

  • ■ It is the hcp’s responsibility to counsel against cpm if it is not medically appropriate for the patient (n = 59, 100%).

  • ■ Patients might experience psychological adverse effects associated with cpm (n = 51, 86%).

  • ■ Access to plastic surgery affects patient and physician decisions about cpm (n = 44, 75%).

TABLE III Shared beliefs of health care professionals (HCPs) with respect to contralateral prophylactic mastectomy (CPM) by determinant level (26 determinants, 59 participants)






 

Most factors believed to encourage cpm use (7 of 10, 70%) were categorized at the individual-level. As mentioned by hcps, these factors most frequently encouraged use of cpm:

  • ■ There is a lack of awareness of existing evidence or guidelines recommending against the use of cpm in early-stage bca (n = 44, 75%).

  • ■ Women request cpm based on anxiety and fear of recurrence (n = 31, 52%).

  • ■ Public influences affect the decision (for example, social media, print media, patients; n = 26, 44%).

Discipline-Specific Themes

Of the 15 discipline-specific factors identified (10 discouraging and 5 encouraging cpm), only 5 (3 discouraging and 2 encouraging factors) were mentioned by at least 50% of the corresponding discipline’s respondents (Table IV). These were the 3 discouraging factors:

  • ■ It is a priority to discourage cpm, especially in low-risk patients (surgical oncology, n = 13, 81%).

  • ■ I am confident when not to recommend cpm (surgical oncology, n = 13, 81%).

  • ■ Readily available information on cpm is scarce (nurses, n = 3, 50%).

TABLE IV Discipline-specific beliefs of health care professionals (HCPs) with respect to contralateral prophylactic mastectomy (CPM) by determinant level (15 determinants)



 

These were the 2 encouraging factors:

  • cpm is discussed for reconstructive purposes (plastic surgeons, n = 9, 60%).

  • ■ Nurses inform oncologists of patients who are interested in cpm (nurses, n = 3, 50%).

Interviews of Women with BCa

The factors identified from the interviews with women (5 discouraging and 12 encouraging use of cpm) centred mostly on their decision to undergo cpm or not (Table V). The factors ref lected mostly individual-level determinants (n = 13, 76%). More than 50% of women identified 1 discouraging and 4 encouraging influences. These were the 3 highest-frequency factors mentioned by women as discouraging cpm use:

  • ■ Information about cpm from the health care team was lacking (n = 8, 53%).

  • ■ I have low awareness of the pros and cons of cpm (n = 6, 40%).

  • ■ The decision about cpm was not influenced by media (n = 6, 40%).

TABLE V Beliefs of women with unilateral breast cancer with respect to contralateral prophylactic mastectomy (CPM) by determinant level (17 determinants, 15 participants)



 

These were the 3 highest-frequency enablers:

  • ■ My choice of cpm was based on better esthetic outcomes (n = 14, 93%).

  • ■ I thought cpm was my decision to make (n = 10, 67%).

  • ■ Information about reasons not to do cpm was provided by the health care team (n = 10, 67%).

Comparing Themes from HCPs and Women with BCa

With a few exceptions, hcps and women with bca largely identified different factors influencing use of cpm. A perception of less-positive oncologic outcomes associated with cpm (such as reduced contralateral bca) was identified as discouraging cpm use by 34 hcps (58%) and 4 women (27%). When women had high anxiety and fear of cancer recurrence, they were more likely to ask for cpm [encouraging factor identified by 31 hcps (52%) and 6 women (40%)]. When women wanted cpm, they were more likely to receive it [encouraging factor identified by 15 hcps (25%) and 10 women (67%)]. Limited access to genetic testing was identified by 2 nurses (33%) and 3 women (20%) as encouraging cpm.

DISCUSSION

In the present study, we simultaneously explored the determinants of the choice to undergo (women) or to recommend or provide (hcps) cpm in a publicly funded health care system. The study is novel in that it evaluates the determinants of cpm from a behaviour change theory perspective, providing both diverse and comprehensive data about the experiences of women and various hcp groups involved in the cpm decision process. Determinants of cpm were multiple and were grouped as barriers or enablers within 4 main categories: individual, influences from others, organizational, and system. In the subsections that follow, we discuss 4 core findings from our study that can be considered when planning to reduce inappropriate use of cpm.

Views of Plastic Surgeons

Our study is the first to explore the views of plastic surgeons about cpm. Interestingly, a factor frequently believed by plastic surgeons to encourage cpm—expressed by more than half our plastic surgeon participants (8 of 15, 53%)—was not having access to cpm guidelines. Although multiple guidelines from the U.S. National Comprehensive Cancer Network12, the Society of Surgical Oncology13, and the U.S. Preventive Services Task Force14—plus a consensus statement from the American Society of Breast Surgeons28—are available, those guidelines are largely directed to breast surgeons. In addition, the American Society of Breast Surgeons consensus statement has been criticized for not including other relevant stakeholders such as the American Society of Plastic Surgeons29.

Because plastic surgeons are frequently part of a patient’s decision-making process with respect to cpm, the creation of a guideline tailored to include plastic surgeons that emphasizes not only the evidence against routine cpm in the non-high-risk patient, but also the esthetic considerations in this population could be useful given that 40% of the plastic surgeons interviewed mentioned that they often “discuss cpm for reconstruction purposes.” Since the completion of our study, a Canadian consensus statement on cpm has been published15. That consensus statement, which was developed using a national Delphi process, included representation from plastic surgeons (2 of 26 panel members).

Patient Fear and Anxiety, Esthetic Concerns

Consistent with prior studies involving women with bca and hcps alike, our study revealed that women’s fear and anxiety about cancer recurrence influences the decision to undergo cpm21,22. Although some studies have shown that quality of life and other measures of psychological well-being are not different between women who undergo cpm and those who do not30,31, most studies demonstrate that women are satisfied with their decision to undergo cpm, and if asked, indicate that they would undergo the procedure again32,33. In addition, we showed that the esthetic concerns of women are a driver of cpm. Women in our study, whether they underwent cpm or not, believed that bilateral mastectomy would improve reconstruction outcomes34.

One way to address fear, anxiety, and esthetic concerns on the part of patients is to develop educational materials such as patient decision aids that accurately inform patients about the risks of contralateral bca and of future recurrence, the lack of a survival benefit for cpm, the psychosocial ramifications of cpm, and the outcomes of reconstruction, including its risks and benefits35. Other strategies to address the core theme of fear and anxiety among women with bca, which centres on cancer recurrence in the contralateral breast, could involve the use of social and other media to educate the public about the actual risks and options.

CPM Discussions Are a Shared Responsibility

Physician—and especially surgeon—recommendations have repeatedly been demonstrated to have a significant effect on a patient’s decision to undergo cpm. In one study, the individual attending surgeon accounted for a large proportion (20%) of the overall variation in cpm use in patients in the Surveillance, Epidemiology, and End Results program registries of the U.S. state of Georgia and of Los Angeles County36. Interestingly, more than half the hcps in our study (52%, including surgeons) seemed to emphasize that the discussion about cpm was a collective and shared responsibility for the members of the entire health care team and not just the surgeons. Often, hcps face the difficult situation of providing ever-increasing amounts of information to patients with bca37; we therefore emphasize the importance of consistent communication between hcps in their messaging about recommendations for or against cpm for each individual patient.

Genetic Testing for BCa

On a system level, limited access to expedited BRCA genetic testing was cited by nurses and women with bca as a key factor encouraging cpm. Currently, such genetic testing is offered only to, and covered only for, people who meet eligibility criteria based on several factors, such as a strong family history of cancer. Obtaining test results can take several weeks to many months in certain jurisdictions. Our findings shows that the lack of clarity about future risk of bca for an already anxious woman might influence the decision to undergo cpm. Interestingly, though, that observation contradicts an American study of changing surgical trends in young patients from the U.S. National Cancer Database, which demonstrated that the increased availability of genetic testing was associated with increased use of cpm from 2003 to 201038.

Strengths and Limitations

Our study has some notable strengths. It is the first national evaluation of the determinants of cpm in women with unilateral bca that has obtained a multi-stakeholder sample of participants from various centres across Canada. Second, the qualitative behavioural approach used for the study allowed for a detailed identification of determinants, which is necessary to inform the design of strategies to reduce cpm. Third, the hcp sample had good representation with respect to sex, age, and years in practice. The main limitation of the study was the opt-in sampling strategy, which might have led to missed feedback from individuals who were more impartial with respect to the topic. Second, more factors encouraging rather than discouraging cpm were identified in the patient sample. That finding might be attributable to the fact that most of our patient sample had undergone cpm. Incorporating the views of more women who have elected not to undergo cpm might have revealed additional factors discouraging cpm use.

CONCLUSIONS

This national study identified several determinants of cpm use in patients with unilateral bca at the individual, influences from others, organization, and system levels. Most of the determinants were shared by all stakeholder groups, but some were unique to hcp specialities or to patients. The findings of this study can be used to inform future knowledge translation interventions to reduce the evidence-to-practice gap where cpm is inappropriately used in practice.

ACKNOWLEDGMENTS

We acknowledge funding support from the Ontario Institute for Cancer Research Knowledge Translation Research Network and the Canadian Cancer Society (Knowledge to Action Grant).

CONFLICT OF INTEREST DISCLOSURES

We have read and understood Current Oncology’s policy on disclosing conflicts of interest, and we declare that we have none.

AUTHOR AFFILIATIONS

*School of Nursing, Faculty of Health Sciences, University of Ottawa, Ottawa, ON,
Clinical Epidemiology Program, The Ottawa Hospital Research Institute, Ottawa, ON,
Bloomberg School of Nursing, University of Toronto, Toronto, ON,
§School of Epidemiology and Public Health, University of Ottawa, Ottawa, ON,
||Cancer Therapeutics Program, The Ottawa Hospital Research Institute, Ottawa, ON,
#Division of Medical Oncology, The Ottawa Hospital Cancer Centre, Ottawa, ON,
**Department of Medicine, University of Ottawa, Ottawa, ON,
††Department of Plastic Surgery, The Ottawa Hospital and University of Ottawa, Ottawa, ON,
‡‡Department of Radiation Oncology, The Ottawa Hospital and University of Ottawa, Ottawa, ON,
§§Department of Surgery, The Ottawa Hospital and University of Ottawa, Ottawa, ON.

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Correspondence to: Janet E. Squires, 501 Smyth Road, Ottawa, Ontario K1H 8L6. E-mail: jasquires@ohri.ca

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Current Oncology, VOLUME 26, NUMBER 4, August 2019








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