Study: Patient outcomes and experiences of going flat

IN-DEPTH REVIEW OF RESEARCH

Study background

For women with early-stage breast cancer, surgical options include breast-conserving surgery, surgery followed by breast mound reconstruction and mastectomy without reconstruction, known as “going flat.” Cancer outcomes are similar regardless of the type of surgery. 

Studies have reported conflicting results regarding quality of life and patient satisfaction with breast reconstruction compared to mastectomy alone.

Despite information about and access to breast reconstruction, some women choose mastectomy alone. Over the years, online communities have been established to provide information and support to women who are considering mastectomy. Together, these communities are the basis of the Going Flat movement. Importantly, the Going Flat movement has identified the concept of “flat denial” among surgeons who either do not offer the option of mastectomy alone, discourage women from going flat, or who leave excess skin to aid in later reconstruction against the patient’s wishes.

Researchers of this study wanted to know

Whether experiences of those who are active in Going Flat communities reflect reports in scientific literature, particularly what motivates a patient to have a mastectomy alone as well as their satisfaction with outcomes. Researchers also wanted to better understand patients’ experiences of flat denial.

Populations in this study

All participants were female at birth, although one identified as male at the time of the study. All respondents had mastectomy to treat or reduce an increased risk of breast cancer.  Most chose mastectomy alone without breast reconstruction; however, a small subset of participants initially had mastectomy with breast mound reconstruction but ultimately went flat.

Study design

A patient experience survey was designed to capture the outcomes and experiences of service and support for patients who opted for mastectomy alone. Patient advocates contributed significantly to the survey development process.

The survey was posted online via Facebook, Twitter and a personal blog for one week (October 15, 2019-October 21, 2019). Participants in online Going Flat communities were encouraged to participate.

The survey consisted of 36 questions. Some questions regarding satisfaction with surgical outcomes and support by surgeons of the patient experience were scored using a 5-point Likert scale. The survey also included questions about demographics and clinical questions.

Study findings

Of the 931 eligible participants, the average age was 49. Most respondents were white (94%) and had private health insurance (71%). Mastectomies were primarily done in the United States (79%) but participants from 22 countries were represented.

Reasons for mastectomy included:

• Breast cancer in one breast (79%).
• Breast cancer in both breasts (15%).
• Risk reduction due to an inherited mutation, family history or predicted high risk (6%).

Most respondents had bilateral mastectomy (80%). Some patients initially had breast reconstruction that was eventually removed (15%). Of these women (139), the reason for removal was a problem with the implant (96/139; 70%).

Among participants:

• Mastectomy alone was the first choice for surgery for most (74%) patients.
• Two-thirds of patients (65%) felt that they had enough information to make an informed decision about their surgery.
• Most participants were satisfied with their surgery.
  • A low level of support from a surgeon of their patient’s decision to go flat or flat denial was the strongest predictor of a patient’s dissatisfaction.
  • Lower satisfaction was reported by those with a BMI over 30 and those having a unilateral mastectomy (one breast removed).
  • The most satisfied patients were those who reported that they had enough information about their options and those whose chose a surgeon who specializes in breast surgery.
• Most patients felt that they received enough counseling before surgery and that their surgeon supported their decision to go flat.
  • A high level of flat denial was reported by 22% of respondents (207/931).
    • Flat denial was less likely to be reported by those patients who had a female versus a male surgeon.
    • Flat denial was also less likely to be reported by those who chose a surgeon who specializes in breast surgery.

The two most common reasons for going flat were the desire for a faster recovery and to avoid having foreign substances in the body. Few patients reported cost as a factor in their decision.  About half of participants reported that they did not think their breasts were important for body image, while 23 percent included this as one of the top two reasons they considered going flat.

Strengths and limitations

Strengths

• Most respondents had mastectomy alone in the past 5 years. This may have reduced recall bias.
• This is the first tool designed by patient advocates to capture the satisfaction and experiences of women who chose to go flat.

Limitations

• This study was limited to participants' self-reported experiences and outcomes.
• Respondents were mostly white (94%) and relatively young. Many women were underrepresented in this study (e.g., older women, those in certain racial and ethnic minority groups and those without private insurance).
• Most respondents were active in online Going Flat communities, and their responses may be biased. For example, they may have been more willing to openly discuss their experiences and outcomes than others.
• The survey has not been formally validated, or tested in large numbers of women.

Context

This study found that most participants were satisfied with their surgical outcomes. This result is different from other studies which have reported lower levels of satisfaction for patients who have had mastectomy alone.

This study also found that flat denial, which indicates the extent to which patients felt unsupported by their surgeons, was experienced by 22 percent of respondents. This finding is consistent with other reports.

Conclusions

While this study reported that most women are satisfied with their outcomes, some patients reported that their surgeons did not support their decision to go flat. This suggests that there is a need for more research better surgeon education and tools to guide and support women who are not interested in breast reconstruction.

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posted 3/24/2021