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Breast: Original Articles

A National Survey to Assess the Population’s Perception of Breast Implant-Associated Anaplastic Large Cell Lymphoma and Breast Implant Illness

Azzi, Alain J. M.D., M.Sc.; Almadani, Yasser M.D.; Davison, Peter F.R.C.S.C.

Author Information
Plastic and Reconstructive Surgery: April 2021 - Volume 147 - Issue 4 - p 795-803
doi: 10.1097/PRS.0000000000007700

Abstract

In 2018, breast augmentation was the most common surgical aesthetic procedure, with over 329,000 cases in the United States.1 Silicone implants accounted for 88 percent of all implants used.1 The growing popularity of breast augmentation has recently been challenged with concerns, notably breast implant-associated anaplastic large cell lymphoma (BIA-ALCL) and breast implant illness (BII).

The first report of BIA-ALCL was described by Keech and Creech in 1997.2 However, it was not until 2011 that the U.S. Food and Drug Administration released a statement reporting a link between breast implants and BIA-ALCL.3–6 Over the years, numerous studies and increasing evidence led the U.S. Food and Drug Administration to update its 2011 warning and officially state in March of 2017 that textured breast implants could cause BIA-ALCL.3 More recently, in July of 2019, the U.S. Food and Drug Administration requested Allergan (Allergan, Inc., Dublin, Ireland) to voluntarily remove Biocell textured implants from the market. This chain of events has led to much media coverage and numerous releases on breast implants. Moreover, with the recent BII concerns—a constellation of physical and psychological symptoms thought to be related to breast implants—there has been significant awareness on social media, with certain groups exceeding 100,000 members.7

Media coverage and social media influence have undoubtedly had a significant impact on the population’s perception of breast implants, often obscuring the thin line between science and pseudoscience.8–10 This is demonstrated by the noticeable surge of requests for “en bloc capsulectomies,” a term that is misused and misunderstood by the general population. It is estimated that 95 percent of patients access online information before consultation, and many of them report being significantly influenced by social media posts.11 Moreover, research on cosmetic surgery patients’ perceptions and decision-making suggests that reality television may have a profound and perceivable impact.12 This is especially relevant, as some shows began highlighting BII as a potential breast augmentation sequela. Moreover, a continued and significant increase in online search engine queries on “breast implant illness” was recently noted.13 The goal of this study was to gauge the public’s general perception of breast implants, levels of concern, spontaneous word associations, and common misperceptions that might need to be addressed by plastic surgeons regarding BIA-ALCL and BII. We hope that the information provided can identify areas of focus that need to be addressed by plastic surgeons, such as public awareness and future practice changes/trends.

PATIENTS AND METHODS

This study was reviewed and approved by our institutional review board. An anonymous survey was developed to assess knowledge and perception regarding BII and BIA-ALCL. Using Amazon Mechanical Turk (Amazon, Seattle, Wash.), a rigorously tested and validated crowdsourcing platform, the general public’s sentiments and overall awareness of these two implant-related conditions were assessed.14–16 (See Figure, Supplemental Digital Content 1, which shows the survey questions, http://links.lww.com/PRS/E371.)

The study was designed to have 1000 respondents in the United States. Respondents’ characteristics such as age, race, highest level of education, and approximate annual income were collected. All respondents completed the survey between October 14 through 18, 2019. The survey’s title was “Public Perceptions of Breast Implant Related Conditions.” Eligibility criteria included female respondents who had an address within the United States and were aged 18 years or older. All respondents agreed to electronic consent before the survey was commenced. Respondents were included only after demonstrating sufficient comprehension and attention to survey questions. To that end, nonrated additional questions were included to ensure that included respondents were attentive and responded truthfully. Three multiple-choice questions were added throughout the survey, aimed at assessing basic language and analytic abilities. The probability of passing all three multiple-choice questions by random chance is 0.8 percent. All responders who did not pass this required screening step were disqualified and excluded. Moreover, double responses to the survey were not permitted. Before distributing the survey, a test with 20 online respondents was performed. The level of difficulty and the neutrality of the questions were assessed and adjusted accordingly.

RESULTS

Demographics

A total of 979 participants met the above eligibility criteria and were included in the study. The majority of the participants were Caucasian (75.18 percent) (Fig. 1). The mean participant age was 38 years (range, 18 to 75 years). The breakdown of participants’ salaries and levels of education are represented in Figures 2 and 3. Most participants did not report a history of breast cancer (95.7 percent) or a history of breast augmentation (93.9 percent) as depicted in Figures 4 and 5. However, the majority of participants reported knowing a close friend or relative diagnosed with breast cancer or having breast implants (62.1 percent and 55.1 percent, respectively). Most participants (85.8 percent) found the survey to be either very easy or easy, and 94.2 percent reported being able to understand the questions extremely well or very well.

Fig. 1.
Fig. 1.:
Racial background of survey participants.
Fig. 2.
Fig. 2.:
Reported annual income of survey participants.
Fig. 3.
Fig. 3.:
Highest level of education of survey participants.
Fig. 4.
Fig. 4.:
Survey participants’ response to “Do you have a history of breast cancer?”
Fig. 5.
Fig. 5.:
Survey participants’ response to “Do you currently or did you previously have breast implants?”

Awareness of BIA-ALCL

Only 82 of 979 of participants (8.4 percent) indicated that they had heard the term “breast implant-associated anaplastic large cell lymphoma” (Fig. 6). Figure 7 represents the breakdown of the source of information regarding BIA-ALCL. Of the participants who had heard of BIA-ALCL, 31 of 82 (37.8 percent) reported being moderately or extremely concerned about BIA-ALCL (Fig. 8) and 35 of 82 (42.7 percent) were less willing to receive implants (Fig. 9). Moreover, 70 of 82 respondents (85.4 percent) who were aware of BIA-ALCL were less likely to recommend breast implants to a family member or friend because of BIA-ALCL (Fig. 10). In addition, 35 of 82 respondents (42.7 percent) who had heard of BIA-ALCL were less likely to undergo breast augmentation themselves because of concerns related to BIA-ALCL.

Fig. 6.
Fig. 6.:
General awareness of survey participants regarding BII and BIA-ALCL. Responses to “Have you ever heard of breast implant illness/breast-implant-associated anaplastic large-cell lymphoma?”
Fig. 7.
Fig. 7.:
Sources of knowledge and information for participants who are aware of BII or BIA-ALCL.
Fig. 8.
Fig. 8.:
Levels of concern and worry regarding BII and BIA-ALCL. Responses to the statement, “Regarding breast BIA-ALCL/BII, please select the option that most accurately reflects how you feel.”
Fig. 9.
Fig. 9.:
Survey participants’ responses to the question, “Has the emergence of breast-implant-associated anaplastic large-cell lymphoma affected your willingness to receive breast implants?” N/A, not applicable.
Fig. 10.
Fig. 10.:
Survey participants’ response to the question, “ Are you more or less likely to recommend breast implants to a family member or friend in light of breast implant illness or BIA-ALCL?”

Awareness of BII

Interestingly, awareness of BII was significantly higher at 50.9 percent (498 of 979) (Fig. 6). Figure 7 represents the breakdown of the source of information regarding BII. Of the respondents who had previously heard of BII, 126 of 498 (25.3 percent) indicated that they were not worried or concerned about BII. However, 320 of 498 participants (64.3 percent) reported being either moderately or extremely concerned about BII (Fig. 8). Furthermore, 195 of 498 participants (39.2 percent) expressed that they were either less likely to or would never consider breast implants because of BII, with 391 of 498 (78.5 percent) being less likely to recommend breast implants to a friend or a family member (Figs. 10 and 11).

Fig. 11.
Fig. 11.:
Survey participants’ responses to the question, “Has the emergence of breast implant illness affected your willingness to receive breast implants?” N/A, not applicable.

General Knowledge of BIA-ALCL

Five general knowledge questions were asked in the survey to assess the public’s level of education on BIA-ALCL. Of the respondents who had previously heard of BIA-ALCL, only three of 82 participants answered all five correctly. The average overall score was 43 ± 25 percent (range, 0 to 100 percent). Table 1 illustrates the correct response rates for each of the five questions.

Table 1. - Survey Participants’ Responses to the General Knowledge Questions Asked Regarding BIA-ALCL*
Question Average Score (%)
Is BIA-ALCL associated with all types of implants? 29
What is the fate of a person with BIA-ALCL? 30
How long does it typically take for someone to develop symptoms of BIA-ALCL? 39
How common do you think BIA-ALCL is? 46
Which of the following is a symptom of BIA-ALCL? 71
*The average score reflects the percentage of participants who correctly answered the general knowledge question.

Word Association with BII and BIA-ALCL

The first words that come to mind when hearing a specific term may provide some insightful data on population sentiment.17 Overall, BII evoked more responses compared to BIA-ALCL, a finding potentially attributed to higher levels of awareness for BII.

The most common word association with BII was “pain.” The words “cancer” and “scary” were the two most common word associations with BIA-ALCL. A significant overlap in word associations can be observed between these two breast implant-related complications, notably the word “cancer” being the second most common word used to describe BII. Table 2 represents the 10 most common words associated with BII and BIA-ALCL.

Table 2. - List of the Most Common Words Survey Participants Associated with BIA-ALCL and BII
Rank BIA-ALCL BII
1 Cancer Pain
2 Scary Cancer
3 Pain Scary
4 Know Infection
5 FDA Know
6 Lymphoma Silicone
7 Terrible Fatigue
8 Breast Sad
9 Dangerous Leaking
10 Painful Painful
FDA, U.S. Food and Drug Administration.

DISCUSSION

General knowledge of BIA-ALCL was assessed in the survey to identify areas where targeted awareness campaigns can lead to the greatest positive contributions to public perception. In addition, these focused questions were also aimed to elucidate and unmask misperceptions regarding breast implants and BIA-ALCL. The results of the survey indicate that the general population is not properly educated on BIA-ALCL. The information disseminated throughout the various news outlets resulted in a certain level of awareness; however, of the respondents who had previously heard of BIA-ALCL, there was a significant level of information paucity and misperception. The most incorrectly answered question was related to the risk profile of various implants (smooth versus textured), where 69.8 percent of participants who had previously heard of BIA-ALCL were not aware of which types of implants were associated with BIA-ALCL. Interestingly, only one-third of the respondents were aware of the prognosis of BIA-ALCL. One-fourth of respondents (24.4 percent) believed that BIA-ALCL would likely lead to death, and 41.9 percent of respondents were unaware of the most common fate of BIA-ALCL. When comparing women without implants to women with implants, there was no significant difference in BIA-ALCL knowledge (average scores of 46 percent versus 43 percent, respectively) (p = 0.4417). This may suggest that women who had previously undergone breast augmentation were not actively researching implants and were exposed to the same information/media as the general population.

To date, there have been no reported cases of BIA-ALCL in a patient with a history of a smooth device only.18,19 Albeit an important detail, this information does not appear to be properly grasped by the general population. This misperception could potentially have a negative impact on the public’s behavior. The results of this survey demonstrate that lack of knowledge/education regarding BIA-ALCL is associated with an increased level of worry. Interesting differences were observed among respondents who were extremely worried about BIA-ALCL and respondents who were not worried or minimally worried. Only one in four participants (25 percent) in the extremely worried cohort of respondents were able to correctly identify the incidence of BIA-ALCL compared to more than half (55 percent) of participants in the cohorts who were not worried or were minimally worried. Patient education and awareness are of paramount importance and may help alleviate some of the anxiety associated with implants.

BIA-ALCL education is challenged by the emergence of BII, further supporting the need for awareness and education among the general public. Social media groups have a tremendous impact on disseminating information and, unfortunately, some of the disseminated information on BII lacks scientific evidence. There is a lack of large prospective randomized studies directly linking breast implants to BII in a cause-and-effect manner. This is reflected in multiple judicial verdicts where judges concluded that there is not enough scientific evidence to directly link breast implants to BII in a causative manner and that the plaintiffs’ interpretation of various studies represented a “leap of faith.”10 The authors do not intend to minimize the symptoms experienced by BII patients; however, further scientific evidence is needed to support the various symptoms and claims. Only 8.4 percent of participants in this survey had heard of BIA-ALCL, compared to 50.9 percent of participants who reported being aware of BII. This discrepancy can be explained by the impact of BII social media campaigns. Moreover, the significant overlap in word association between BIA-ALCL and BII may signify a confusion between the two terms and the need to clarify these two distinct entities. Sentiment relating to breast implants may partially stem from the lack of distinction between BIA-ALCL and BII.

To effectively manage public perceptions, plastic surgeons must develop an understanding of implant-related concerns and grasp how they may influence patient decisions. Data collected in this survey indicate that patients may be less likely to accept or recommend breast implants in light of BIA-ALCL and/or BII. Lack of education may lead to misperceptions and to patient refusal of all types of implants (smooth and textured), despite the attempts made by the plastic surgeon to provide the latest evidence. This may represent a challenge for especially susceptible breast cancer patients, who do not want to worry about the potential of developing another cancer. The misperceptions this study identifies require an urgent action plan to remedy the current lack of awareness and knowledge regarding BIA-ALCL and BII. The findings of this study are also timely, as they follow recently published data suggesting that the term “plastic surgery” could evoke negative sentiments among social media users, further supporting the need to address general public perceptions.20 Encouraging collective action by various established plastic surgery organizations to use their social media following to provide evidence-based information about BII and BIA-ALCL was a primary motivation behind this study. For example, the American Society of Plastic Surgeons currently has more than 150,000 followers in various social media accounts (e.g., Facebook, Instagram, Twitter). These social media accounts can provide a crucial platform to disseminate evidence-based information and enable patients to share their experiences in a welcoming environment.

We acknowledge that the generalizability of our findings to other populations may be limited. Over 70 percent of the 979 female respondents were Caucasian. However, this percentage is in keeping with the most recent U.S. Census Bureau estimate of 76.5 percent.21 We acknowledge that selection bias is always a possibility in surveys, as English-speaking women who are Internet savvy are targeted using this platform. However, in an effort to avoid selection bias, the keywords “BIA-ALCL” and “BII” were not included in the survey title or description. We also acknowledge that a larger sample size would enable a more powerful subgroup analysis. Moreover, prospective studies are needed to assess how awareness and education may influence patients’ perceptions.

CONCLUSIONS

This survey highlights a gap in the public’s knowledge, suggesting the need for vocal informed advocates informing the public, particularly on the well-established safety profile of smooth breast implants to date. It is imperative for plastic surgeons to harness the power of social media to educate the public with evidence-based information.

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