One Size Does Not Fit All; Patient Preference for Breast Reconstruction Education Materials

Advancements in breast reconstruction, including prepectoral implant-based reconstruction and autologous tissue reconstruction, have increased available options for breast cancer patients.¹ Staged reconstruction, oncologic treatment—such as radiation—and the unique physical characteristics of each patient add to the complexity of breast reconstruction conversations and decision-making between both providers and patients.² Prior research suggests that patient satisfaction with breast reconstruction is correlated with their level of understanding of the procedure in the preoperative stage, as well as individual expectations.^2-4 Additional sources of information—such as written materials, videos, phone applications, websites, and courses—assist in conveying information about breast reconstruction.^1,5-9

Patient education resources should be comprehensive, accurate, and readable and must convey all necessary information in a standardized format.^10-12 Inadequate patient education contributes to patient reluctance and anxiety regarding reconstruction.^3,10,13,14 A study by Vargas et al1² analyzed the readability of top websites for breast reconstruction and found that these websites are written at a higher reading level than the 6th grade reading level recommended by the National Institutes of Health and American Medical Association.^11,12 Additionally, other studies examining patient understanding and ability to describe surgical plans have found that patients often miss major elements.^13,15 Misunderstanding of the procedural plan can lead to postoperative dissatisfaction and regret.^13,14,16 Proper communication with clear expectations, as well as assessment of patient understanding regarding the procedural plan, are vital components to the breast reconstruction patient’s plan.^15,16

Breast reconstruction patients are diverse, with a wide range of socioeconomic backgrounds potentially impacting preferences for how breast reconstruction education materials are presented.^17-19 Income, race/ethnicity, and education are all factors that impact the decision-making process of patients to undergo postmastectomy reconstruction.^18,20,21 This may reflect an interplay of several underlying factors, including language barriers, cultural influences, financial limitations, as well as potential for provider bias.¹⁸ It is imperative, however, that breast reconstruction surgeons provide diverse resources and convey information unique to the needs of the individual patient.

The objective of this prospective observational study is to understand the preferences of patients towards various education modalities at Virginia Commonwealth University Health System (VCUHS). The authors hypothesize that patients from different demographic or socioeconomic backgrounds will have varying patient education preferences to best inform decision-making.

Study Population

A prospective observational study of 60 breast reconstruction patients was conducted between November 2020 and May 2021. The study was approved by VCUHS Institutional Review Board. The population included patients undergoing evaluation for mastectomy and reconstruction after a breast cancer diagnosis. Women 18 years or older undergoing first-time immediate or delayed breast reconstruction for cancer treatment or prophylaxis were eligible for participation. Patients were given a questionnaire after initial consultation appointment with the plastic surgery team.

Questionnaire

Before the initial consultation with the plastic surgeon, a questionnaire was offered to patients to elicit preferences for education tools. In the questionnaire, demographic information was collected, including age, marital status, level of education, race, perceived self-reported knowledge prior to the appointment, resources accessed prior to the initial appointment, and preferred education modalities. Patients could select multiple options for research sources they used prior to the initial appointment, as well as preferred education tools. “Additional physician sources” was included as a variable to determine if patients gathered information from other physicians, even from specialties other than plastic surgery. The questionnaire offered 4 options to describe "self-reported knowledge": nothing at all, a little, "I knew that reconstruction was an option, but I did not know what kind of reconstructions were available"; enough, "I knew about the different types of reconstruction, and I have an idea of what I would like for me"; a lot, "I had done a lot of research on various reconstruction, and I already knew what I would want."

Statistical Analysis

The statistical analysis was computed using SAS V9.4 (SAS Institute Inc), with critical value of significance set to 0.05. Age was analyzed as a continuous variable; differences in research sources and preferred patient education tools based on age were analyzed using an independent samples t test. Differences based on race and education levels were analyzed using a Fisher exact test.

Patient Characteristics

Basic demographic information is outlined in the Table. Average patient age was 52.3 ± 10.8 years, with the majority being college educated or more (80%), married (68.3%), and White/Caucasian (61.7%). Most patients (56.9%) self-described their knowledge of breast reconstruction prior to the initial appointment as “little” based on the definitions provided in our methods.

Sources Used by Patients

Before the initial appointment, most patients (83.3%) did some degree of independent research (Figure 1). The majority of patients (71.7%) conducted an internet search, whereas the second-most-referenced source was friends and/or family (43.3%).

Regardless of age, the internet was the most-referenced source prior to the initial appointment. Younger patients (44.6 ± 9.4 years) were significantly more likely than older patients (53.7 ± 10.5 years) to have referenced additional physicians prior to their initial appointment (P = .0174).

Patients with a college education were significantly more likely to have conducted any research prior to the initial appointment (P = .0206) and to have used the internet as a research source (P = .0267; Figure 2).

Those patients who self-identified as “Caucasian/White” were significantly more likely than nonwhite patients to talk to friends and/or family members as a research source (P = .0150; Figure 3).

Preferred Patient Education Tools

Most patients preferred books/written materials (71.7%) or video presentations (58.3%; Figure 4). Younger patients (43.2 ± 6.7) were significantly more likely than older patients (53.2 ± 10.7) to seek additional physician sources (P = 0.0465). Younger patients (43.2 ± 6.7) were significantly more likely than older patients (53.2 ± 10.7) to prefer the institution’s website as an education modality (P = .0465). Regardless of race or education, books/written materials and video presentations were still the most preferred patient education tools.

Current literature on patient preferences for breast reconstruction education tools remains limited. Factors such as socioeconomic status, educational background, and ethnicity can play a role in the understanding of breast reconstruction and postreconstruction satisfaction.^17,21 The reconstructive surgeon should therefore be aware of what resources patients may seek based on their background to optimize patient education in these cases.

Current research suggests that patients cite their reconstructive surgeon as their primary resource in the understanding of breast reconstruction.^1,22 However, patients seeking information solely from their surgeon may require multiple visits to cover in-depth information not discussed in the initial appointment. Therefore, the benefit of adjunctive tools becomes apparent because patients can limit excess clinic time by accessing information independently.¹ This study is unique from prior studies, as the option to choose “reconstructive surgeon” as a preferred patient education source was removed as an effort to isolate preferred adjunctive educational tools apart from the surgeon. Additionally, this study is the first of the authors’ knowledge to examine what research sources breast reconstruction patients utilized prior to the initial appointment.

This research shows that the majority of patients (71.7%) accessed the internet to research information on breast reconstruction, as cited by prior literature (Figure 1).^1,23,24 Due to the wide breadth of breast reconstruction information present on the internet, it is particularly important for the reconstructive surgeon to note which websites that the patient gathered their information from in order to clarify patient understanding as necessary. As Powell et al¹⁹ noted in an analysis of breast reconstruction patient educational materials, many major websites on breast reconstruction are written at a much higher reading level than recommended by the National Institutes of Health, which may contribute to limited patient understanding or misinterpretation of reconstruction options or expected results.

This study discovered that college-educated patients were significantly more likely to have done research prior to the initial appointment than patients with a high school education or less (Figure 2). Patients without a college education were also significantly less likely to use the internet as a research source prior to the initial appointment. This finding is in alignment with prior literature that suggests that patients with lower health literacy are also less likely to access certain patient education tools, such as electronic resources, especially if these resources are written at higher-than-average reading levels.²⁵ In these cases it becomes especially important for the reconstructive surgeon to reduce medical jargon in clinic visits and ensure understanding using the teach-back method or other similar mechanisms to assess patient understanding.²⁵ Furthermore, recommending resources written at a 6th grade reading level—the reading level of the average US adult—would be most appropriate to help overcome educational barriers to informed decision-making.²⁵

Within this study, patients were highly likely to have conducted research prior to the initial appointment, regardless of age. Stratifying based on demographics, younger patients were significantly more likely to have accessed information from other doctors prior to the initial appointment and also preferred to gather information from multiple physician sources. Other studies have examined the role of age in health care decision-making, with older patients less likely to take an active role in seeking information on their health conditions than younger patients.^24,26-30 In cancer patients in particular, Turk-Charles et al²⁷ found that older patients were less likely to seek additional information from direct medical sources, such as doctors and nurses. Similar to our study, Turk-Charles et al²⁷ found no age differences in accessing nonmedical sources, such as videos and friends/family. This health-seeking behavior observed among older individuals, as suggested by a study conducted by Woodward et al,²⁹ could be due to the perceived decreased self-efficacy and decreased desire for “health-related control” among older patients. Based on these findings, the reconstructive surgeon is met with a challenge to engage particularly older patients in the shared decision-making process. In contrast, younger patients who have already had multiple consultations with other reconstructive surgeons may require their current provider to help consolidate information.

With respect to ethnicity, over 60% of the present study identified as non-Hispanic Caucasian/White (Table 1). Racial disparities in postmastectomy breast reconstruction are well-documented, with some studies citing over 80% of postmastectomy breast reconstruction patients as Caucasian/White.^31,32 A study conducted by Soni et al³³ noted numerous factors that could potentially account for the racial discrepancy in accessing breast reconstruction, including lack of insurance, lower referral rates to plastic surgeons for certain ethnic groups, and cultural reasons. This study did not find any differences in preferred patient education tools between Caucasian/White women and nonwhite women. This is in contrast to the results from a study by Pestana et al,¹ which found that Caucasian/White patients preferred to use electronic resources, such as interactive websites or phone apps. Pestana et al¹ cited studies that suggest that disparities in access to internet resources among nonwhite populations may explain their results. However, the common limitation between the present study and that conducted by Pestana et al¹ is that the studies were conducted through a single institution, which can reduce the overall generalizability of results to other populations. Therefore, more research examining race and patient preference for education tools is needed to improve understanding of any associations.

In this study, Caucasian/White women were significantly more likely than nonwhite women to use friends and/or family as a research source prior to the initial appointment (Figure 3). These results could in part be explained by the psychosocial stigma associated with a diagnosis of breast cancer. Rubin et al³⁴ references the “shame” associated with breast cancer that could be internalized more deeply within a cultural context among minority groups, and acknowledges its potential effect in shaping a woman’s approach desiring a reconstructive procedure. Among minority groups, this could manifest as a decreased desire to involve friends and/or family in the information-seeking process. More research is needed to better elucidate patient motivations to access friends and/or family as a research source, especially in the context of race. For the reconstructive surgeon, awareness of sociocultural factors in patient decision-making can facilitate better discussion and could make the patient more receptive to the role of reconstructive surgery in their care.

A limitation of this study includes the small sample size available. Additionally, as with all single-institution studies, results may be limited in generalizability. However, the sample in this study was fairly representative of the demographics of breast reconstruction patients noted in other studies, which would make the findings likely applicable to this group of patients.^31,32

Additionally, annual income was not collected in the questionnaire but could potentially serve as a confounder in interpreting these results. According to the US Census Bureau, certain disadvantaged minority groups in the United States, such as African Americans and Hispanics, have the highest poverty rates in the country, as well as lower educational backgrounds.^35,36 In this study, college-educated patients were significantly more likely to have used the internet prior to the initial appointment or have done any degree of research prior to the initial appointment (Figure 2). However, without additional information about income, this finding could have also been due to limited finances to purchase resources and even access the internet using an electronic device. Despite this limitation, this study found that regardless of education or race, patients still preferred to use videos as a preferred education modality. If income was a barrier in obtaining electronic resources to access the internet, differences in preferred educational modalities might have also been expected because patients with financial instability may recognize sources that require electronic devices—such as the internet, the institution’s website, and videos—as less preferable. The absence of such differences could suggest that income may have not been initially restrictive among patients using the internet prior to the initial appointment and rather a genuine matter of preference for those of lower educational backgrounds. Research is needed to examine satisfaction of patient education following implementation of video presentations or written/book materials in practice, as well as quantify the efficacy of these tools. Additionally, future studies may also further explore how income impacts preferred education modalities among this diverse patient population.

With several avenues to explore breast reconstruction options, patient preferences for educational tools may vary based on demographics. This study found that regardless of age, education, and ethnicity, the majority of patients preferred video presentations and written and/or book materials as a patient education resource. Differences were seen between patients under the age of 44 and those over 50, with younger patients preferring websites and multiple physician opinions. College-educated patients were more likely to have done research before the initial appointment. For breast reconstruction patient education materials, one size does not fit all, and providers should strive to include options to meet the needs of this diverse patient population.

Acknowledgments: The authors would like to thank Luke Wolfe, MS (Biostatistician; Assistant Professor of Department of Surgery, Virginia Commonwealth University)  for conducting the statistical analysis for this study.

Affiliations: ¹Department of Surgery, University of Illinois at Chicago, Chicago, IL; ²Division of Plastic and Reconstructive Surgery, University of Minnesota, Minneapolis, MN; ³Division of Plastic and Reconstructive Surgery, Virginia Commonwealth University Health System, Richmond, VA; ⁴Breast Reconstruction & Restoration Center, Mercy Medical Center, Baltimore, MD

Correspondence: Shreya Raman, MD; shreyaraman8@gmail.com

Presented at: 64th Annual Southeastern Society for Plastic and Reconstructive Surgeons (SESPRS) Conference (June 13th-17th, 2021).

Disclosures: The authors of this study disclose no relevant financial or nonfinancial relationships .