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Breast Reconstruction: Impact of Patient-Centered, Expectations-Based Education on Women Undergoing Reconstructive Surgery After Mastectomy

Deborah Tedesco
Victoria Loerzel
CJON 2020, 24(2), 186-194 DOI: 10.1188/20.CJON.186-194

Background: Among patients undergoing breast reconstruction, preoperative expectations for improvement may not match postoperative results. Discordance between provided preoperative information and what patients actually hear and understand may be a factor contributing to these unrealistic expectations.

Objectives: The aim of this study was to determine the impact of patient-centered, expectations-based education on women undergoing breast reconstruction.

Methods: The 27 participants completed a preoperative questionnaire concerning their postoperative expectations. The nurse practitioner tailored preoperative education based on questionnaire results. A postoperative questionnaire was given to assess patient satisfaction with the preoperative information provided.

Findings: A high percentage of survey participants agreed that they had received an appropriate amount of education, believed they were well prepared for surgery, and knew what to expect in the recovery period.

Breast cancer is the most common cancer in women, with the exception of some kinds of skin cancer, regardless of race or ethnicity (Centers for Disease Control and Prevention, 2019). On average, a woman born today in the United States has about a one in eight chance of being diagnosed with breast cancer at some point during her life (National Cancer Institute, 2019). Although specialists often recommend breast-conserving therapy for small, localized cancers, many women choose unilateral or bilateral mastectomy, even when cancer is discovered early and in a single breast (Kummerow et al., 2015). Following mastectomy, some women choose breast reconstruction.

According to the American College of Surgeons’ National Surgical Quality Improvement Program database, of the 67,450 patients undergoing mastectomy for breast cancer between 2005 and 2014, the number of patients choosing reconstruction increased from about 27% in 2005 to 43% in 2014 (Ilonzo et al., 2017). In another study, women who chose breast reconstruction after mastectomy reported they did so to be more confident and attractive, to feel more “whole,” and to have some closure about their diagnosis and treatment (Spector et al., 2011). A study by Fang et al. (2013) found that women who have undergone breast reconstruction have higher body image scores than women who have not, but lower body image scores than women undergoing breast-conserving therapy.

Although breast reconstruction is intended to help restore positive body image in women who have had a mastectomy, the reconstructed breast differs significantly from a woman’s natural breast. Consequently, some women have expressed that the reconstructed breasts do not look how they expected them to look and that they did not realize there would be visible scars. Women receive information about this at their surgical consultation, but they sometimes do not remember it, which may be because of information overload, denial, or learning readiness, presumably related to the psychological distress that is common with a new diagnosis of breast cancer (Mertz et al., 2012). It is important that women understand the difference between natural and reconstructed breasts and have realistic expectations before undergoing surgery (Pusic et al., 2012) because women with unrealistic expectations on this subject often report dissatisfaction with results (Glassey et al., 2018).

Women undergoing breast reconstruction may have expectations about their surgical experience and outcome. Pusic et al. (2012) found that four key areas of expectation in women undergoing reconstruction are breast appearance, psychosocial impact, feel of the breast, and process of care and recovery, including preoperative information that should be provided. Mazza (2013) classified expectations in breast reconstruction as clear, vague, or unarticulated.

Research suggests a connection among expectations, education, and satisfaction with the surgical experience and outcomes. Abu-Nab and Grunfeld (2007) found that expectations of surgical outcome and information provided were related to overall satisfaction with breast reconstruction, suggesting that unrealistic expectations led to dissatisfaction with outcomes. Flitcroft et al. (2017) also reported an association between expectations and satisfaction, but they noted difficulty evaluating the literature because of a lack of specific definitions for these terms (i.e., expectations and satisfaction) and the absence of a standard method for measuring satisfaction. Flitcroft et al. (2017) recommended that additional research be undertaken using a valid and reliable instrument to measure satisfaction and expectations and that an expectations checklist be used in the preoperative consultation to help facilitate informed discussions.

Unfortunately, standard education before breast reconstruction is not always patient centered (Cohen et al., 2016) and does not typically focus on individual patient expectations (Snell et al., 2010). However, using a patient-centered approach to education may improve understanding of the surgical process and satisfaction with the end result (Arakelian et al., 2017). Temple-Oberle et al. (2014) reported that education adapted to the individual positively affected satisfaction with breast reconstruction. Snell et al. (2010) found that individuals who receive patient-centered education that focuses on their expectations were more likely to have higher postoperative satisfaction.

Spector et al. (2011) identified a connection between information that patients perceived as not helpful and unexpected outcomes; for example, when women did not expect a possible outcome, they were surprised by the outcome and reported feeling unprepared for it. Spector et al. (2011) suggested that there is a need for patient-centered preoperative education to better prepare women and to help facilitate realistic expectations. In addition, women undergoing breast reconstruction have reported there is information they needed but did not receive, particularly in relation to pain, the use of drains, and changes in sensation (Nissen et al., 2002). This lack of information was associated with lower satisfaction with the overall reconstruction, and Nissen et al. (2002) suggested that providers should ensure that women receive appropriate information regarding surgery and the recovery period, including a range of possible experiences. Likewise, preoperative discussion should include the possibility of complications and the setting of an expectation of reasonable cosmetic results (Contant et al., 2000).

Based on this review of the literature, expectations, patient-centered care, and information are related to satisfaction with breast reconstruction. Women undergoing breast reconstruction need information, and their perception of the quality and amount of information received is related to satisfaction with outcomes. A need exists to examine satisfaction with information as related to the expectations of women undergoing breast reconstruction. The purpose of this study was to determine the impact of patient-centered, expectations-based preoperative education for women undergoing breast reconstruction after mastectomy, particularly whether patient-centered education, based on expectations, affects satisfaction with information provided among this population.

Methods

The current study was conducted at the Orlando Health Aesthetic and Reconstructive Surgery Institute in Florida, a hospital-based reconstructive surgery practice. Participants were all English-speaking women aged 18 years or older who had been diagnosed with breast cancer and were planning to undergo immediate reconstruction with prepectoral breast tissue expander placement. Patients undergoing prophylactic mastectomy, delayed reconstruction, or immediate reconstruction with implants were excluded. Institutional review board approval was obtained, and the study was designated minimal risk.

Participants were screened by nursing staff immediately after the initial consultation with their reconstructive surgeon; during this appointment, they received general information about the surgery to be performed, the placement of drains, pain management, activity restrictions, and placement of silicone implants or autologous reconstruction for the second phase of reconstruction. Patients who met inclusion criteria were provided with a flyer containing study information and invited to meet with the principal investigator (D.T.). During this meeting, the principal investigator described the study and ensured potential participants that they would still receive standard education at the preoperative education visit if they chose not to enroll in the study.

For those who elected to enroll, verbal consent was obtained, and the principal investigator provided the Breast-Q™–Breast Reconstruction Expectations Module (Preoperative), version 2.0 (Pusic et al., 2012), to participants to complete at home. This preoperative questionnaire is intended to assess participant expectations about the following:

•  Information they wished to receive

•  Involvement in decision making

•  Complication risk

•  Support from medical staff

•  Pain

•  The expansion process

•  Breast appearance (including symmetry, scars, shape, and likeness to the natural breast)

•  Coping

•  Feel to touch

•  Sensation

•  The need for further surgery

The Breast-Q is the only instrument that assesses these expectations and is free for individual providers and nonprofit institutions (www.qportfolio.org/breast-q/breast-cancer). Although validity has been determined for a group of Breast-Q instruments, validity has not been determined individually for this specific questionnaire (Pusic et al., 2009). The Breast-Q–Breast Reconstruction Expectations Module (Preoperative), version 2.0, was developed to be used in conjunction with the Breast-Q–Breast Reconstruction Expectations Module (Postoperative), version 2.0, which has been tested and found to be valid and reliable (Pusic et al., 2009); this postoperative questionnaire was not used in the current study.

Participants returned for a follow-up visit with the completed preoperative questionnaire, and the principal investigator, a nurse practitioner, reviewed the responses. Immediately after this review, the standard preoperative education was provided, with questionnaire responses used to tailor education to the individual patient. Individualized information was provided to help reset any unrealistic expectations the patient may have had. For example, if a patient indicated on the preoperative questionnaire that she would not see reconstruction scars, the principal investigator provided additional education on scarring and incorporated photographs to ensure that the patient understood scars would be present after reconstruction. Similarly, if a patient indicated on the preoperative questionnaire that in one year her reconstructed breasts would look the same as her natural breasts, education was provided by the principal investigator about how the reconstructed breasts would not look like her natural breasts before mastectomy and that the process of reconstruction may still be ongoing in one year.

Evaluation of this intervention (patient-centered, expectations-based education) was completed four to six weeks after reconstruction using the Postoperative Evaluation of Breast Reconstruction Education Provided Preoperatively (PEBREPP) questionnaire. This postoperative questionnaire was developed by the principal investigator and consisted of 18 items: 16 items with responses scored on a five-point scale ranging from strongly agree to strongly disagree, and 2 items with open-ended responses. Questions on this postoperative questionnaire evaluated patient satisfaction with information provided related to surgery, including information about appearance, sensation, scarring, pain, and complications. The questions were developed after completing information-need discussions with patients and reviewing qualitative research from the literature (Flitcroft et al., 2017; Pusic et al., 2012) and were based on the Breast-Q–Breast Reconstruction Expectations Module (Preoperative), version 2.0, items (Pusic et al., 2012). Data were analyzed using descriptive statistics, including frequencies and means.

Findings

A total of 43 participants consented to and enrolled in the current study. Of the 43 participants, 16 dropped out before completion because they had changed their minds about reconstruction or encountered a change in their treatment or surgical plan, or because the education was provided by someone other than the principal investigator (and thus was not based on expectations). Consequently, a total of 27 participants completed the study (see Table 1). The mean participant age among all 27 patients was 50.33 years, with a range of 37–76 years. The mean body mass index among 26 patients was 28.74 (overweight), with a range of 19.56 (normal weight) to 42.46 (morbid obesity). The education level among patients ranged from high school to graduate school. Most participants were currently employed (n = 17). Social support, or having a person to count on to help out, was reported as good by a majority of participants (n = 26). In addition, three patients reported being diagnosed with diabetes mellitus, four reported postoperative complications, two reported skin necrosis after mastectomy, one reported delayed healing, and one reported infection.

Breast-Q™–Breast Reconstruction Expectations Module (Preoperative), Version 2.0

According to results from the preoperative survey, patients reported realistic, unrealistic, and unformed expectations (see Tables 2 and 3). Most participants responded that they expected their reconstructed breasts to look similar to each other but not exactly the same and that their reconstructed breasts would look very or slightly different from natural breasts. In addition, a majority of participants reported having realistic expectations concerning expected scarring and sensation of the reconstructed breasts after surgery.

Unrealistic expectations were also noted preoperatively. Eight participants reported that it was very unlikely they would experience a complication after surgery and that they were at low risk of complications, and seven participants reported that they expected to have some sensation in their reconstructed nipples.

In addition, several questions had high response rates of “do not know,” which was interpreted as unformed expectations. A total of 13 participants did not know their likelihood of experiencing a complication after surgery, and 10 participants responded “I do not know” or did not respond to a question concerning how they think their chest will look after expander placement. Many participants also had unformed expectations concerning reconstructed breast movement, sensation at the sides of the chest, sensation in reconstructed nipples, and the appearance of reconstructed nipples.

Responses representing unrealistic expectations and unformed expectations were noted to be problem areas, and patients were subsequently provided with tailored information in an attempt to reset their expectations. Responses that received the most intervention because of unrealistic or unformed expectations included those for questions related to complications, chest appearance after expander placement, pain with tissue expanders and the expansion process, symmetry and shape of the reconstructed breasts, scarring, reconstructed breast sensation, reconstructed nipple appearance and sensation, and the need for further reconstructive surgery 10 years after initial reconstruction.

Postoperative Evaluation of Breast Reconstruction Education Provided Preoperatively

The PEBREPP was provided to patients at a visit between four and six weeks after reconstruction (see Table 4). One participant chose not to answer any questions on the PEBREPP, leaving the questionnaire blank. The majority of participants agreed or strongly agreed that they had received an appropriate amount of education (n = 25) and felt well prepared for surgery (n = 26). Most patients responded that the education they received increased their knowledge related to the surgery (n = 26) and prepared them for the hospital experience (n = 26) and recovery period (n = 26). Most participants had knowledge of pain management methods following surgery (n = 25) and knew what to expect during the expansion process (n = 23). Many reported that the education decreased their anxiety leading up to surgery (n = 24) and after surgery (n = 23).

Results from the preoperative questionnaire compared to results from the postoperative questionnaire show the changes in patients’ beliefs because of preoperative education. Expectations regarding pain were successfully modified into realistic expectations. Preoperatively, 17 participants had realistic pain expectations; postoperatively, after the education intervention, 25 participants responded that they knew what to expect and had knowledge of methods to manage their pain after reconstruction. In addition, before reconstruction, 6 participants had realistic expectations related to complications; after the intervention and reconstruction, 24 participants did.

Discussion

By assessing expectations before clinician-provided preoperative education, unformed and unrealistic expectations were identified, allowing for the provision of tailored education, which resulted in more realistic expectations about reconstruction and outcomes. Participants were receptive to education and expressed interest in receiving information about their upcoming surgery, which is consistent with previous studies (Contant et al., 2000; Spector et al., 2011).

Many participants had unformed expectations about the likelihood of complications after reconstruction, as well as about reconstructed breast shape, sensation, and movement. This aligns with Mazza’s (2013) findings that, preoperatively, individuals undergoing breast reconstruction often have general or vague expectations related to complications and changes they may experience in body image. Having unformed expectations is understandable because women have not previously experienced reconstruction and do not know what to expect.

Based on results from the preoperative questionnaire, participants in the current study had unrealistic expectations related to symmetry and appearance of the reconstructed breasts; these findings were also reported by Flitcroft et al. (2017), Snell et al. (2010), and Steffen et al. (2017). Expecting reconstructed breasts to have perfect symmetry and the feel, look, and sensation of natural breasts is unrealistic after mastectomy (de Boer et al., 2015). It is possible that these and other unrealistic beliefs may be influenced by social media, popular television shows, or advertisements, all of which spotlight women with “perfect” bodies (Crockett et al., 2007). According to Montemurro et al. (2018), surgeons underestimate the amount of information that patients obtain from social media and other nonmedical source; patients and providers agree there is much misinformation on social media, but its use is increasing.

Evaluation of postoperative questionnaire results demonstrated that patient-centered, expectations-based education provided by a nurse had a positive effect. Participants expressed that, because of the education, they felt well prepared for surgery and knew what to expect in the postoperative period. They also stated that they knew what to expect regarding pain and complications, and these two areas were the most affected by education. In the current study, the lowest scores postoperatively, after education, although still high, were related to knowing what to expect in regard to scarring and appearance of the chest after surgery, which is consistent with the study by Abu-Nab and Grunfeld (2007).

Limitations

This study had several limitations. It was an exploratory study with a small sample size and a high level of attrition. Despite the small sample size, this patient population and scenario are what is typically seen in practice. More specifically, individuals will meet with the plastic surgeon and initially desire mastectomy with reconstruction; however, some patients change their minds and opt instead for mastectomy with no reconstruction or breast conservation therapy. Alternatively, sometimes surgery is delayed because of the need for neoadjuvant chemotherapy. Another limitation is that the PEBREPP was developed by the principal investigator; it has not been tested for reliability but does have face and content validity.

Implications for Practice

Although education begins with the surgeon, nurses are an important part of the surgical team and should provide education to women undergoing breast reconstruction. Nurses and other healthcare providers who educate women undergoing breast reconstruction should preoperatively assess expectations. Similar to a needs assessment, an expectations assessment gives the provider the information necessary to customize education to the individual.

Some practices may not have a nurse who is able to provide preoperative education. In this instance, the responsibility of providing patient-centered education would rest solely on the surgeon; to provide appropriate education, a second visit may be necessary to fully answer patients’ surgical questions. Adding a nurse to the office staff may be more cost effective and improve satisfaction.

Understanding that realistic expectations related to scarring, sensation, pain, complications, and appearance of the reconstructed breast are important, the nurse providing education can initiate a dialogue about these topics to tailor the education and attempt to reset expectations, as necessary. Tailoring education is necessary for patient-centered education. Providing education that is based on expectations may also improve satisfaction.

Nurses providing education to women undergoing reconstruction need to understand that there are particular problem areas that require focused patient education. Preoperatively, many participants in this study did not have realistic expectations related to complications, pain, scarring, chest appearance, and sensation; by focusing more on these areas, nurses can provide better education, leading to more realistic expectations. Recommendations include the use of photographs and the use of repetition of information.

Additional research is recommended. The Breast-Q–Breast Reconstruction Expectations Module (Preoperative), version 2.0, was effective in assessing expectations of women before reconstruction. However, an instrument focusing on mastectomy and the first phase of reconstruction that allows for the woman to record questions would assist in assessing expectations and identifying those questions. In addition, the PEBREPP needs to be further tested for validity and reliability. It would be helpful if the PEBREPP were tested across different cultural and socioeconomic groups. In the current study, the PEBREPP was used with women of higher socioeconomic status with more education and who are insured. Testing in different populations to ensure inclusion of groups known to experience healthcare disparities is recommended, and a modified version of the PEBREPP could be developed to evaluate preoperative education in different surgical populations. More research on patients’ readiness to learn and the impact of this on surgical education is necessary. When cancer is diagnosed, there is a rush to schedule surgery (Bleicher et al., 2016). Perhaps methods exist to facilitate readiness to learn that may enhance the preoperative education experience. 

Conclusion

Participants’ expectations were determined, and the nurse practitioner provided tailored preoperative education based on these expectations. Postoperatively, participants evaluated their preoperative education, evaluating satisfaction with information provided based on their expectations. This study’s findings indicate that patient-centered, expectations-based education can be effective in modifying patients’ preoperative expectations from unrealistic or unformed to realistic. For patients undergoing breast reconstruction, this study’s findings support clinicians’ provision of tailored education, based on patient expectations.

The authors gratefully acknowledge Patty Geddie, PhD, RN, OCN®, James Mayo, MD, and the staff of the Orlando Health Aesthetic and Reconstructive Surgery Institute for their assistance in this study.

About the Author(s)

Deborah Tedesco, DNP, APRN, ANP-BC, AP-PMN, CWS, CWCN-AP, is a senior nurse practitioner at the Orlando Health Aesthetic and Reconstructive Surgery Institute in Florida; and Victoria Loerzel, PhD, RN, OCN®, FAAN, is the Beat M. and Jill L. Kahli Endowed Professor in Oncology Nursing in the College of Nursing at the University of Central Florida in Orlando. The authors take full responsibility for this content and did not receive honoraria or disclose any relevant financial relationships. The article has been reviewed by independent peer reviewers to ensure that it is objective and free from bias. Tedesco can be reached at debtedesco17@yahoo.com, with copy to CJONEditor@ons.org. (Submitted July 2019. Accepted September 18, 2019.)

 

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