Abstract
Background:
Missing data can affect the representativeness and accuracy of survey results, and sexual health-related surveys are especially at a higher risk of nonresponse due to their sensitive nature and stigma. The purpose of this study was to evaluate the proportion of patients who do not complete the BREAST-Q Sexual Well-being relative to other BREAST-Q modules and compare responders versus non-responders of Sexual Well-being. We secondarily examined variables associated with Sexual Well-being at 1-year.
Methods:
A retrospective analysis of patients who underwent breast reconstruction from January 2018 to December 2021 and completed any of the BREAST-Q modules postoperatively at 1-year was performed.
Results:
2,941 patients were included. Of the four BREAST-Q domains, Sexual Well-being had the highest rate of nonresponse (47%). Patients who were separated (versus married, OR=0.69), whose primary language was not English (versus English, OR=0.60), and had Medicaid insurance (versus commercial, OR=0.67) were significantly less likely to complete the Sexual Well-being. Postmenopausal patients were significantly more likely to complete the survey than premenopausal patients. Lastly, autologous reconstruction patients were 2.93 times more likely to respond than implant-based reconstruction patients (p<0.001) while delayed (versus immediate, OR=0.70, p=0.022) and unilateral (versus bilateral, OR=0.80, p=0.008) reconstruction patients were less likely to respond. History of psychiatric diagnosis, aromatase inhibitors, and immediate breast reconstruction were significantly associated with lower Sexual Well-being at 1-year.
Conclusion:
Sexual Well-being is the least frequently completed BREAST-Q domain, and there are demographic and clinical differences between responders and non-responders. We encourage providers to recognize patterns in non-response data for Sexual-Well-being in order to ensure that certain patient population’s sexual health concerns are not overlooked.
Keywords: nonresponse, missing data, surveys, sexual health, BREAST-Q, breast reconstruction
Introduction
A major obstacle in optimizing patient reported outcomes (PROs) for research and clinical care is missing data. PROs are dependent on a patients’ desire to complete the measures, and such willingness can be influenced by patient, clinical, or procedure-related differences.1 For example, age, income level, education, and ethnicity can affect PRO response rate.2–4 Missing data has implications for the representativeness and accuracy of survey results. It can cause loss of power to detect change, under- or over-estimate intervention effects, and lead to selection bias.5,6 Recognizing missing data in PROs is essential to minimize nonresponse and selection bias and to augment available data.4,6
Sexual health concerns are common in breast cancer patients. Breast cancer patients may experience reduced sexual desire, discomfort, and poor body image during their cancer journey.7–9 Despite the prevalence of sexual dysfunction, sexual health-related surveys may be at a higher risk of nonresponse given the stigma and the sensitive nature of some of the questions.10–13 Age and socio-cultural barriers may hinder patients from freely discussing their sexual health with their providers.14–16 Attitudes, experience, and interest regarding sexuality can also affect participants’ willingness to partake in sexual health surveys.17,18 Nonetheless, there is a paucity of information on missing data in sexual health surveys among breast cancer patients. There may be a significant proportion of patients with sexual dysfunction who go unnoticed because of missing data. It is critical to identify non-responders in this patient population to ensure that all patients’ sexual health concerns are sufficiently addressed, and that sexual health outcomes research is representative of all breast cancer patients.4
The purpose of this study was to evaluate the proportion of patients who do not complete the BREAST-Q Sexual Well-being module relative to other modules and to compare characteristics of responders versus non-responders. We secondarily aimed to assess factors associated with the 1-year score to identify risk factors for decreased Sexual Well-being. We hypothesize that the Sexual Well-being domain is the least completed domain and that sociodemographic differences, such as age and primary language, affect response rate.
Methods
Study population
The study was approved by institutional review board of Memorial Sloan Kettering Center, an academic and National Cancer Institute-designated cancer center. Women who underwent breast reconstruction from January 2018 to December 2021 and completed at least one of the BREAST-Q modules postoperatively at 1-year were included. 2018 was chosen as the starting point as quality improvement initiative was implemented to increase BREAST-Q completion rates at that year.19 Patients without any BREAST-Q data at 1-year, younger than 18 years old, or did not undergo postmastectomy breast reconstruction were excluded.
Data Collection and Variables
Demographic data and clinical details were recorded via chart review. Variables included age at surgery, race, ethnicity, marital status, body mass index (BMI), smoking status, menopausal status, primary language, insurance, median income, and past medical history (diabetes, cardiovascular disease, hypertension (HTN), lymphedema, and history of psychiatric diagnosis). Median income was based on patients’ zip-code.20 Patients with a history of psychiatric diagnosis were diagnosed with any of the following disorders, as classified by International Classification of Diseases (ICD), Tenth Revision (diagnosis codes beginning with F), or ICD Ninth Revision (diagnosis codes between 290 and 319.99) codes: anxiety, mood, substance-related, somatic, sexual/gender identity, personality, behavioral and neurodevelopmental, psychotic, sleep, and eating disorders. Clinical variables included chemotherapy, radiation, axillary lymph node dissection, sentinel lymph node biopsy, and endocrine therapy. For clinical factors, we assessed mastectomy type as well as reconstructive type, laterality, and timing. We also examined whether patients were readmitted or returned to the operating room within 90 days of their breast reconstruction.
Questionnaire
The BREAST-Q is a rigorously developed questionnaire that is validated, condition-specific and has been widely used to measure quality of life and satisfaction after breast reconstruction from the patients’ perspective.21 The questionnaire was administered as part of routine clinical care preoperatively and at various time points postoperatively. The four main modules include: Satisfaction with Breasts, Physical Well-being of the Chest, Psychosocial Well-being, and Sexual Well-being. Depending on the type of reconstructive surgery (autologous versus implant) patients are prompted to take additional surveys. Autologous patients are administered Physical Well-being of the Abdomen and Satisfaction with Abdomen while Implant patients are administered Satisfaction with Implants. The 1-year postoperative timepoint was based on 1-year after the definite reconstruction (direct-to-implant, exchange from TE to implant, immediate autologous, or conversion from TE to autologous). The raw score was converted to summary scores ranging from 0 to 100 using the Q-Score software, with higher scores indicating higher patient satisfaction or quality of life. A minimal clinically important difference (MCID) of 4 points was considered clinically important.22
Statistical Analysis
Baseline demographics, surgical, and cancer characteristics were described for all patients using medians and interquartile ranges (IQR) for continuous variables and frequencies and percentages for categorical variables. We used frequencies and percentages to describe the completion of 1-year BREAST-Q scores for all domains. Variables were compared between the BREAST-Q Sexual Well-Being responders and non-responders at 1-year postoperatively using the Wilcoxon rank sum test for continuous variables and the Chi-squared test for categorical variables. All p-values were adjusted using the false discovery rate correction for multiple testing. Multivariable logistic regression was used to assess variables associated with completion of the Sexual Well-being BREAST-Q at 1-year postoperatively. Multivariable linear regression analysis of all patients with 1-year postoperative data was conducted with multiple imputation to accommodate missing preoperative scores. Patient demographic and clinical variables included in each model were hypothesized a priori.
Results
Patient Characteristics
2,941 breast reconstruction patients completed at least one BREAST-Q domain at 1-year follow-up. The median age at surgery was 49 (interquartile range: 42 to 56). Most patients were White (72%), not Hispanic or Latino (83%), and were married (70%). The median BMI was 24.2 (IQR: 21.5 to 27.8). The remaining demographic and clinical information are described in Table 1. There were 1,566 (53.2%) patients with available and 1,375 (46.8%) patients with missing Sexual Well-being scores at 1-year. The two cohorts were compared, and there were significant differences in the distribution of sociodemographic and clinical factors between the two cohorts, as described in Table 1.
Table 1.
Patient Demographics and Clinical Details for all patients, patients with Sexual Well-being Scores, and patients without Sexual Well-being Scores.
Patient Demographics | All Patients (n=2,941) | Available (n=1,566) | Missing (n=1,375) | p-value |
---|---|---|---|---|
Age at Surgery 1 | 49 (42, 56) | 49 (42, 55) | 49 (42,57) | 0.3 |
Race White Asian Black Other |
2,116 (72%) 287 (9.8%) 293 (10%) 245 (8.3%) |
1,162 (74%) 135 (8.6%) 142 (9.1%) 127 (8.1%) |
954 (69%) 152 (11%) 151 (11%) 118 (9.6%) |
0.021 |
Ethnicity Not Hispanic Hispanic Unknown |
2,451 (83%) 299 (10%) 191 (6.5%) |
1,326 (85%) 140 (8.9%) 100 (6.4%) |
1,125 (82%) 159 (12%) 91 (6.6%) |
0.057 |
Marital Status Married Separated Single |
2,046 (70%) 292 (9.95%) 603 (21%) |
1,124 (72%) 128 (8.2%) 314 (20%) |
922 (67%) 164 (12%) 289 (21%) |
0.001 |
Language English Non-English |
2,840 (97%) 101 (3.4%) |
1,533 (98%) 33 (2.1%) |
1,307 (95%) 68 (4.9%) |
<0.001 |
Income 1 | $103,548 ($77,044, $131,412) | $106,631 ($79,524, $131,412) | $101,405 ($73,856, $131,013) | 0.024 |
Insurance
Commercial Medicaid Medicare Self-Pay |
2,345 (80%) 184 (6.3%) 385 (13%) 27 (0.9%) |
1,290 (82%) 75 (4.8%) 190 (12%) 11 (0.7%) |
1,055 (77%) 109 (7.9%) 195 (14%) 16 (1.2%) |
<0.001 |
Body Mass Index (BMI) 1 | 24.2 (21.5, 27.8) | 24.3 (21.6, 28.1) | 24.2 (21.3 27.7) | 0.3 |
Smoking Status Never Smoker Current Smoker Former Smoker |
2,233 (76%) 75 (2.6%) 633 (22%) |
1,186 (76%) 33 (2.1%) 347 (22%) |
1,047 (76%) 42 (3.1%) 286 (21%) |
0.2 |
Menopause Status Premenopausal Postmenopausal Unknown |
322 (11%) 1,191 (40%) 1,428 (49%) |
136 (8.7%) 615 (39%) 815 (52%) |
186 (14%) 576 (42%) 613 (45%) |
<0.001 |
Comorbidities Diabetes Cardiovascular Disease Hypertension Psychiatric Diagnoses Lymphedema |
164 (5.6%) 704 (24%) 665 (23%) 1,651 (56%) 246 (8.4%) |
81 (5.2%) 390 (25%) 332 (21%) 890 (57%) 141 (9.0%) |
83 (6.0%) 314 (23%) 333 (24%) 761 (55%) 105 (7.6%) |
0.3 0.2 0.051 0.4 0.2 |
Clinical Characteristics | ||||
Lymph Node Axillary lymph node dissection Sentinel lymph node biopsy |
581 (20%) 2,263 (77%) |
297 (19%) 1,219 (78%) |
284 (21%) 1,044 (76%) |
0.3 0.2 |
Chemotherapy None Neoadjuvant Adjuvant |
654 (22%) 1,185 (40%) 1,102 (37%) |
363 (23%) 614 (39%) 589 (38%) |
291 (21%) 571 (42%) 513 (37%) |
0.3 |
Radiation None Neoadjuvant Adjuvant |
2,135 (73%) 310 (11%) 496 (17%) |
1,153 (74%) 181 (12%) 232 (15%) |
982 (71%) 129 (9.4%) 264 (19%) |
0.003 |
Aromatase inhibitor | 1,045 (63%) | 532 (34%) | 513 (37%) | 0.059 |
Mastectomy Type Skin sparing Nipple sparing |
2,586 (88%) 355 (12%) |
1,379 (88%) 187 (12%) |
1,207 (88%) 168 (12%) |
0.8 |
Timing of Reconstruction Immediate Delayed |
2,406 (82%) 535 (18%) |
1,256 (80%) 310 (20%) |
1,150 (84%) 225 (16%) |
0.016 |
Laterality Bilateral Unilateral |
1,724 (59%) 1,217 (41%) |
964 (62%) 602 (38%) |
760 (55%) 615 (45%) |
<0.001 |
Reconstruction Method Implant Autologous |
2,023 (69%) 918 (31%) |
974 (62%) 592 (38%) |
1,049 (76%) 326 (24%) |
<0.001 |
Complications | ||||
Readmission within 90 days | 250 (8.5%) | 133 (8.5%) | 117 (8.5%) | >0.9 |
Reoperation within 90 days | 522 (18%) | 289 (18%) | 233 (17%) | 0.3 |
Median (Interquartile Range)
BREAST-Q Completion Rates
Of the 2,941 patients who completed at least one BREAST-Q module at 1-year, the nonresponse data for the four main BREAST-Q modules were as follows: 44% for Satisfaction with Breasts, 43% for Physical Well-being of the Chest, 43% for Psychosocial Well-being, and 47% for the Sexual Well-being (Figure 1).
Figure 1.
Proportion of Nonresponse for each BREAST-Q Module
Likelihood of BREAST-Q Sexual Well-being Completion
Patients who were separated (versus married, OR=0.69, 95% CI: 0.53, 0.90; p=0.006), whose primary language was not English (versus English, OR=0.60, 95% CI: 0.37, 0.96; p=0.034), and had Medicaid insurance (versus commercial, OR=0.67, 95% CI: 0.48, 0.94; p=0.021) were less likely to complete the Sexual Well-being survey relative to the other BREAST-Q domains. Postmenopausal patients were significantly more likely to complete the survey than premenopausal patients (OR=1.66, 95% CI: 1.23, 2.24; p<0.001). Patients who underwent autologous reconstruction were also more likely to respond to Sexual Well-being (versus implant, OR=2.93, 95% CI: 2.32, 3.71; p<0.001) whereas patients who underwent unilateral (versus bilateral, OR=0.80, 95% CI: 0.67, 0.94; p=0.008) and delayed reconstruction (versus immediate, OR=0.70, 95% CI: 0.52, 0.95; p=0.022) were less likely to respond. Although not significant, Asian patients were less likely to complete Sexual Well-being than White patients (OR=0.78, 95% CI: 0.59, 1.02; p=0.07) (Table 2).
Table 2.
Logistic regression model for completion of BREAST-Q Sexual Well-being at 1-year (n=2,941)
Patient Demographics | OR1 | 95% CI1 | p-value |
---|---|---|---|
Age at Surgery | 1.00 | 0.99, 1.01 | 0.9 |
Race White Asian Black Other |
— 0.78 0.80 0.98 |
— 0.59, 1.02 0.60, 1.06 0.72, 1.33 |
0.070 0.12 0.9 |
Ethnicity Not Hispanic Hispanic Unknown |
— 0.80 0.98 |
— 0.60, 1.05 0.71, 1.33 |
0.11 0.9 |
Marital Status Married Separated Single |
— 0.69 1.00 |
— 0.53, 0.90 0.82, 1.22 |
0.006 >0.9 |
Language English Non-English |
— 0.60 |
— 0.37, 0.96 |
0.034 |
Income | 1.00 | 1.00, 1.00 | 0.7 |
Insurance
Commercial Medicaid Medicare Self-Pay |
— 0.67 0.95 0.56 |
— 0.48, 0.94 0.72, 1.25 0.24, 1.22 |
0.021 0.7 0.15 |
Body Mass Index (BMI) | 1.0 | 0.98, 1.01 | 0.5 |
Smoking Status Never Smoker Current Smoker Former Smoker |
— 0.72 1.06 |
— 0.44, 1.17 0.88, 1.28 |
0.2 0.5 |
Menopause Status Premenopausal Postmenopausal Unknown |
— 1.66 2.08 |
— 1.23, 2.24 1.61, 2.69 |
<0.001 <0.001 |
Comorbidities
Diabetes Cardiovascular Disease Hypertension Psychiatric Diagnoses Lymphedema |
1.06 1.02 0.88 1.05 1.29 |
0.76, 1.50 0.82, 1.27 0.72, 1.07 0.90, 1.24 0.82, 1.81 |
0.7 0.9 0.2 0.5 0.14 |
Clinical Characteristics | |||
Lymph Node Axillary lymph node dissection Sentinel lymph node biopsy |
1.04 1.28 |
0.65, 1.68 0.81, 2.04 |
0.9 0.3 |
Chemotherapy None Neoadjuvant Adjuvant |
— 0.87 1.07 |
— 0.69, 1.11 0.86, 1.33 |
0.3 0.6 |
Radiation None Neoadjuvant Adjuvant |
— 1.08 0.93 |
— 0.81, 1.46 0.73, 1.19 |
0.6 0.6 |
Aromatase inhibitor | 0.95 | 0.80, 1.14 | 0.6 |
Mastectomy Type Skin sparing Nipple sparing |
— 0.92 |
— 0.72, 1.17 |
0.5 |
Timing of Reconstruction Immediate Delayed |
— 0.70 |
— 0.52, 0.95 |
0.022 |
Laterality Bilateral Unilateral |
— 0.80 |
— 0.67, 0.94 |
0.008 |
Reconstruction Method Implant Autologous |
— 2.93 |
— 2.32, 3.71 |
<0.001 |
Complications | |||
Readmission within 90 days | 0.85 | 0.63, 1.14 | 0.3 |
Reoperation within 90 days | 1.12 | 0.90, 1.39 | 0.3 |
OR=Odds Ratio, CI= Confidence Interval
Factors associated with 1-year Sexual Well-being
As shown in Table 3, patients with higher preoperative Sexual Well-being scores had significantly higher scores postoperatively (β=0.39, 95% CI: 0.32, 0.46; p<0.001). History of psychiatric diagnoses (β=−4.4, 95% CI: −8.0, −2.9; p<0.001) and a receipt of aromatase inhibitor (β=−3.5, 95% CI: −6.4, −0.58; p=0.019) were significantly associated with lower Sexual Well-being at 1-year. Patients who have diabetes (β=6.3, 95% CI: 0.70, 12; p=0.027) and underwent delayed reconstruction (versus immediate, β=6.5, 95% CI: 2.0, 11; p=0.005) had significantly higher Sexual Well-being. Diabetes, history of psychiatric diagnosis, and delayed reconstruction met the MCID of 4.
Table 3.
Multiple linear regression model for Sexual Well-being at 1-year where Multiple Imputation is used to Impute Missing Preoperative Scores (n=1,566)
Patient Demographics | Beta | 95% CI1 | p-value |
---|---|---|---|
Preoperative Sexual Well-being | 0.39 | 0.32, 0.46 | <0.001 |
Age at Surgery | 0.05 | −0.14, 0.23 | 0.6 |
Race White Asian Black Other |
— −0.13 −4.5 1.7 |
— −4.5, 4.2 −9.1, 0.12 −3.1, 6.5 |
>0.9 0.056 0.5 |
Ethnicity Not Hispanic Hispanic Unknown |
— −3.2 −0.47 |
— −7.9, 1.5 −5.5, 4.6 |
0.2 0.9 |
Marital Status Married Separated Single |
— −2.2 −1.7 |
— −6.9, 2.4 −4.9, 1.5 |
0.3 0.3 |
Language English Non-English |
— 2.2 |
— −6.6, 11 |
0.6 |
Income | 0.00 | 0.00, 0.00 | 0.054 |
Insurance
Commercial Medicaid Medicare Self-Pay |
— −1.5 −0.73 6.5 |
— −7.3, 4.3 −5.0, 3.6 −7.7, 1` |
0.6 0.7 0.4 |
Body Mass Index (BMI) | −0.16 | −0.44, 0.11 | 0.3 |
Smoking Status Never Smoker Current Smoker Former Smoker |
— −2.9 1.9 |
— −11, 5.4 −1.1, 4.9 |
0.5 0.2 |
Menopause Status Premenopausal Postmenopausal Unknown |
— −2.1 −1.4 |
— −7.2, 3.0 −6.0, 3.1 |
0.4 0.5 |
Comorbidities
Diabetes Cardiovascular Disease Hypertension Psychiatric Diagnoses Lymphedema |
6.3 −2.7 2.4 −5.4 −2.3 |
0.70, 12 −6.1, 0.72 −0.78, 5.5 −8.0, −2.9 −7.5, 2.9 |
0.027 0.12 0.14 <0.001 0.4 |
Clinical Characteristics | |||
Lymph Node Axillary lymph node dissection Sentinel lymph node biopsy |
−0.88 1.3 |
−8.6, 6.9 −6.3, 8.9 |
0.8 0.7 |
Chemotherapy None Neoadjuvant Adjuvant |
— −1.2 −0.07 |
— −5.1, 2.8 −3.5, 3.4 |
0.6 >0.9 |
Radiation None Neoadjuvant Adjuvant |
— −0.86 −0.59 |
— −5.4, 3.7 −4.6, 3.4 |
0.7 0.8 |
Aromatase inhibitor | −3.5 | −6.4, −0.58 | 0.019 |
Mastectomy Type Skin sparing Nipple sparing |
— 1.8 |
— −2.0, 5.6 |
0.4 |
Timing of Reconstruction Immediate Delayed |
— 6.5 |
— 2.0, 11 |
0.005 |
Laterality Bilateral Unilateral |
— 0.69 |
— −2.0, 3.3 |
0.6 |
Reconstruction Method Implant Autologous |
— 2.3 |
— −0.97, 5.6 |
0.2 |
Complications | |||
Readmission within 90 days | −4.0 | −8.6, 0.60 | 0.088 |
Reoperation within 90 days | −2.1 | −5.4, 1.3 | 0.2 |
CI= Confidence Interval
Discussion
A major advantage of PROs in routine clinical care is that providers can identify problems that patients may be experiencing and to take appropriate actions.23,24 Consequently, patients who do not complete the BREAST-Q Sexual Well-being survey may go unnoticed in clinical settings even if they experience sexual dysfunction. Recognizing factors in nonresponse will ensure that everyone is receiving appropriate care and that all patient groups are well represented in Sexual Well-being outcomes research.25 As we hypothesized, we found that Sexual Well-being was the least completed BREAST-Q domain. We also identified demographic and clinical factors that differed between responders and non-responders.
Our results demonstrated patients who are separated are less likely to respond to Sexual Well-being than married patients. This is concerning as studies indicate that patients without marital partners have an increased likelihood of sexual dysfunction and experience more problems with orgasm, satisfaction, and pain.26,27 While income and race were not associated with nonresponse, we did find that insurance coverage affected the likelihood of completing Sexual Well-being. Patients under Medicaid insurance are less likely to respond to Sexual Well-being than patients with commercially available insurance. Insurance coverage can act as a surrogate marker for income and race, as more patients of lower socioeconomic status and ethnic minorities have public insurances.28–31 Previous studies have suggested that patients with lower socioeconomic status experience more sexual dysfunction and lower sexual frequency.13,32–34 Patients of ethnic minority backgrounds may also feel uncomfortable accessing sexual health-related services and completing sexual health surveys due to perceived irrelevance, cultural taboo, or fear of shame and judgement.3,16,35 Thus, despite experiencing more sexual dysfunction than their counterparts, patients who are not married and have Medicare insurances may be overlooked in clinical care and in outcomes research.
The current examination suggests that those whose primary language is not English, despite completing at least one of the other three BREAST-Q domains, are less likely to complete Sexual Well-being. Existing literature corroborates this claim, indicating that a significant proportion of minority patients’ sexual health concerns may be disregarded.4,36,37 For example, Ahlmark et al reported that content and language of questionnaires are barriers for immigrant and non-Western descendants in responding to surveys.38 Even if patients are familiar with English, but are not fluent, survey items may not be completely understood as intended due to cultural or religious contexts.39 Since non-English speaking patients are less likely to complete Sexual Well-being, strategies to improve survey collection in these populations are necessary.40 Validated PROs in languages other than English or translators should be available in clinical settings so that patients are able to articulate their concerns.36 For example, BREAST-Q has been validated in multiple languages.41–43 Further, although our institution provides translators for patients, more efforts are needed to incorporate translators when patients are completing the BREAST-Q. Another approach is to explain to patients that the purpose of Sexual Well-being is to identify any concerns preemptively to improve their quality of life; this may help motivate patients to complete the questionnaires.44 It is imperative that providers recognize sociodemographic factors that affect response rate, and approach conversations about patients’ sexual health during follow-ups.
Interestingly, we found that postmenopausal patients are more likely to complete Sexual Well-being than premenopausal patients. Postmenopausal status is associated with sexual dysfunction and worse Female Sexual Function Index survey scores.45,46 It is reassuring that despite having more sexual health concerns, postmenopausal patients are more likely to respond to the Sexual Well-being survey. At the same time however, premenopausal breast cancer can be more aggressive and for those premenopausal patients who require endocrine therapy, sexual dysfunction and hot flashes are common.47,48 Fertility is another concern for many premenopausal patients.47 Therefore, while it is encouraging that postmenopausal patients are completing Sexual Well-being, more efforts need to be made to ensure that premenopausal patients are responding to the survey and that their sexual health concerns are addressed.
Lastly, our findings suggest that reconstructive factors may affect response rates. Implant-based reconstruction patients are less likely to complete the Sexual Well-being than autologous-based, which is concerning as implant-based reconstruction is more common than autologous reconstruction. This suggests that a significant proportion of breast cancer patients’ Sexual Well-being may not be captured.49 We also found that patients with unilateral and delayed reconstruction are less likely to complete the Sexual Well-being. Reasons for these relationships are less clear, and additional studies are necessary to understand the impact of laterality and timing on Sexual Well-being response rates.
The lack of responses from certain patients can compromise the accuracy of study results, and findings may not fully represent the intended patient population.13 For example, we demonstrated that patients of separated marital status are less likely to complete the survey, but in our linear regression model, marital status was not a predictor of Sexual Well-being score at 1-year. Previous studies suggest that separated patients experience negative changes in sexual health after breast cancer, but given the decreased likelihood of responding, our results may not reflect the possible association.50,51 Moreover, delayed reconstruction patients are less likely to complete the survey but have significantly higher Sexual Well-being at 1-year. It is possible that delayed and immediate reconstruction patients have similar long-term Sexual Well-being, but the available data for delayed reconstruction is skewed towards higher scores. Therefore, while our study suggests several factors that are associated with decreased Sexual Well-being at 1-year, it is important to cautiously assess the results as our findings may not be transferrable to the general population due to nonresponse.
Limitations of the study include the retrospective design, single-institution population setting, and selection bias. Given that our patient population was primarily White and not Hispanic, future missing data studies should examine nonresponse in Sexual Well-being in other patient populations. Another limitation is the order of the BREAST-Q modules when administered to patients. At our institution, Sexual Well-Being is the last of the 4 major domains completed, with BREAST-Q administered in the following order: Satisfaction with Breasts, Psychosocial Well-being, Physical Well-being of the Chest, and Sexual Well-being. If patients undergo abdomen-based autologous reconstruction, there are two more modules before Sexual Well-being: Physical Well-being of the Abdomen and Satisfaction with Abdomen. If patients undergo an implant-based reconstruction, they are prompted to take Satisfaction with Implants after the Sexual Well-being. Therefore, it is possible that survey fatigue contributes to the lower completion rate of Sexual Well-being.52,53 While we did not examine the completion rates for these additional BREAST-Q domains, future studies should examine completion rates for these adjunct domains. Nonetheless, a few findings conflict with this sentiment. First, even though Physical Well-being of the Chest is administered after Satisfaction with Breasts, the completion rate for Physical Well-being of the Chest is higher. Further, before Sexual Well-Being, autologous reconstruction patients have two more surveys to take than implant reconstruction patients, yet our findings suggest that patients who undergo autologous reconstruction are significantly more likely to complete Sexual Well-being than those who undergo implant reconstruction. This suggests that survey fatigue may not be the sole contributing factor to the lower completion rate. Since the order of BREAST-Q domains is institution-based, other institutions should also examine their non-response rates in Sexual Well-being or determine how different orders of BREAST-Q domains can influence response rates.
Conclusion
Of the primary BREAST-Q domains, Sexual Well-being is the least frequently completed. Patients who are separated, whose primary language is not English, and have public insurances are less likely to complete the Sexual Well-being domain. Additional factors such as menopause status and reconstructive types may influence nonresponse in Sexual Well-being. We encourage providers to recognize patterns in non-response data for the BREAST-Q Sexual-Well-being to ensure all patients’ sexual health concerns are addressed even if they do not complete the survey.
Synopsis:
In this retrospective analysis of 2,941 postmastectomy breast reconstruction patients, we found that Sexual Well-being is the least completed BREAST-Q domain. We identified marital status, primary language, and insurance as risk factors for completion of the Sexual Well-being. Patterns in nonresponse for Sexual-Well-being need to be better understood so that every patient’s sexual health concerns is properly addressed.
Funding:
This research was funded in part through the NIH/NCI Cancer Center Support Grant P30-CA008748.
Footnotes
Conflicts of Interest: Carrie S. Stern, MD—equity in MirrorMe3D. Jonas Nelson- consultant for RTI. Other authors have no conflict of interests.
References
- 1.Berlin NL, Hamill JB, Qi J, Kim HM, Pusic AL, Wilkins EG. Nonresponse bias in survey research: lessons from a prospective study of breast reconstruction. J Surg Res. Apr 2018;224:112–120. doi: 10.1016/j.jss.2017.11.058 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 2.Malavige LS, Wijesekara P, Epa DS, Ranasinghe P, Levy JC. Ethnicity and neighbourhood deprivation determines the response rate in sexual dysfunction surveys. BMC Res Notes. Sep 4 2015;8:410. doi: 10.1186/s13104-015-1387-2 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 3.Shiraishi M, Sowa Y, Inafuku N. Long-term survey of sexual well-being after breast reconstruction using the BREAST-Q in the Japanese population. Asian J Surg. Jan 2023;46(1):150–155. doi: 10.1016/j.asjsur.2022.02.007 [DOI] [PubMed] [Google Scholar]
- 4.Srour MK, Tadros AB, Sevilimedu V, et al. Who Are We Missing: Does Engagement in Patient-Reported Outcome Measures for Breast Cancer Vary by Age, Race, or Disease Stage? Ann Surg Oncol. Dec 2022;29(13):7964–7973. doi: 10.1245/s10434-022-12477-1 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 5.Ayilara OF, Zhang L, Sajobi TT, Sawatzky R, Bohm E, Lix LM. Impact of missing data on bias and precision when estimating change in patient-reported outcomes from a clinical registry. Health Qual Life Outcomes. Jun 20 2019;17(1):106. doi: 10.1186/s12955-019-1181-2 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 6.Johnson TP, Wislar JS. Response rates and nonresponse errors in surveys. JAMA. May 2 2012;307(17):1805–6. doi: 10.1001/jama.2012.3532 [DOI] [PubMed] [Google Scholar]
- 7.Marsh S, Borges VF, Coons HL, Afghahi A. Sexual health after a breast cancer diagnosis in young women: clinical implications for patients and providers. Breast Cancer Res Treat. Dec 2020;184(3):655–663. doi: 10.1007/s10549-020-05880-3 [DOI] [PubMed] [Google Scholar]
- 8.Soldera SV, Ennis M, Lohmann AE, Goodwin PJ. Sexual health in long-term breast cancer survivors. Breast Cancer Res Treat. Nov 2018;172(1):159–166. doi: 10.1007/s10549-018-4894-8 [DOI] [PubMed] [Google Scholar]
- 9.Luo F, Link M, Grabenhorst C, Lynn B. Low Sexual Desire in Breast Cancer Survivors and Patients: A Review. Sex Med Rev. Jul 2022;10(3):367–375. doi: 10.1016/j.sxmr.2022.02.001 [DOI] [PubMed] [Google Scholar]
- 10.Huang S, Cook SC. It Is Not Taboo: Addressing Sexual Function in Adults with Congenital Heart Disease. Curr Cardiol Rep. Aug 22 2018;20(10):93. doi: 10.1007/s11886-018-1029-0 [DOI] [PubMed] [Google Scholar]
- 11.Klaeson K, Hovlin L, Guva H, Kjellsdotter A. Sexual health in primary health care - a qualitative study of nurses’ experiences. J Clin Nurs. Jun 2017;26(11–12):1545–1554. doi: 10.1111/jocn.13454 [DOI] [PubMed] [Google Scholar]
- 12.Ollivier R, Aston M, Price S. Let’s talk about sex: A feminist poststructural approach to addressing sexual health in the healthcare setting. J Clin Nurs. Feb 2019;28(3–4):695–702. doi: 10.1111/jocn.14685 [DOI] [PubMed] [Google Scholar]
- 13.Bond JC, Abrams J, Wesselink AK, White KO, Rothman KJ, Wise LA. Predictors of Non-Response to a Sexual Health Survey in a North American Preconception Cohort Study. J Sex Med. Nov 2022;19(11):1707–1715. doi: 10.1016/j.jsxm.2022.08.199 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 14.Ezhova I, Savidge L, Bonnett C, Cassidy J, Okwuokei A, Dickinson T. Barriers to older adults seeking sexual health advice and treatment: A scoping review. Int J Nurs Stud. Jul 2020;107:103566. doi: 10.1016/j.ijnurstu.2020.103566 [DOI] [PubMed] [Google Scholar]
- 15.Arthur EK, Bissram J, Rechenberg K, Wills A, Campanelli K, Menon U, Nolan TS. Sexual health and intimacy after cancer treatment in women of color: A systematic review. Psychooncology. Oct 2022;31(10):1637–1650. doi: 10.1002/pon.6005 [DOI] [PubMed] [Google Scholar]
- 16.Zangeneh S, Savabi-Esfahani M, Taleghani F, Sharbafchi MR, Salehi M. A silence full of words: sociocultural beliefs behind the sexual health of Iranian women undergoing breast cancer treatment, a qualitative study. Support Care Cancer. Dec 27 2022;31(1):84. doi: 10.1007/s00520-022-07502-8 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 17.Dawson SJ, Huberman JS, Bouchard KN, McInnis MK, Pukall CF, Chivers ML. Effects of Individual Difference Variables, Gender, and Exclusivity of Sexual Attraction on Volunteer Bias in Sexuality Research. Archives of Sexual Behavior. 2019/11/01 2019;48(8):2403–2417. doi: 10.1007/s10508-019-1451-4 [DOI] [PubMed] [Google Scholar]
- 18.Wiederman MW. Volunteer bias in sexuality research using college student participants. Journal of Sex Research. 1999;36(1):59–66. doi: 10.1080/00224499909551968 [DOI] [Google Scholar]
- 19.Nelson JA, Chu JJ, Dabic S, et al. Moving towards patient-reported outcomes in routine clinical practice: implementation lessons from the BREAST-Q. Qual Life Res. Jan 2023;32(1):115–125. doi: 10.1007/s11136-022-03213-z [DOI] [PMC free article] [PubMed] [Google Scholar]
- 20.United States Census Bureau: Income. https://www.census.gov/topics/income-poverty/income.html [Google Scholar]
- 21.Pusic AL, Klassen AF, Scott AM, Klok JA, Cordeiro PG, Cano SJ. Development of a new patient-reported outcome measure for breast surgery: the BREAST-Q. Plast Reconstr Surg. Aug 2009;124(2):345–353. doi: 10.1097/PRS.0b013e3181aee807 [DOI] [PubMed] [Google Scholar]
- 22.Voineskos SH, Klassen AF, Cano SJ, Pusic AL, Gibbons CJ. Giving Meaning to Differences in BREAST-Q Scores: Minimal Important Difference for Breast Reconstruction Patients. Plast Reconstr Surg. Jan 2020;145(1):11e–20e. doi: 10.1097/PRS.0000000000006317 [DOI] [PubMed] [Google Scholar]
- 23.Snyder CF, Aaronson NK, Choucair AK, et al. Implementing patient-reported outcomes assessment in clinical practice: a review of the options and considerations. Qual Life Res. Oct 2012;21(8):1305–14. doi: 10.1007/s11136-011-0054-x [DOI] [PubMed] [Google Scholar]
- 24.Fung CH, Hays RD. Prospects and challenges in using patient-reported outcomes in clinical practice. Qual Life Res. Dec 2008;17(10):1297–302. doi: 10.1007/s11136-008-9379-5 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 25.Schamber EM, Takemoto SK, Chenok KE, Bozic KJ. Barriers to completion of Patient Reported Outcome Measures. J Arthroplasty. Oct 2013;28(9):1449–53. doi: 10.1016/j.arth.2013.06.025 [DOI] [PubMed] [Google Scholar]
- 26.Pereira VM, Nardi AE, Silva AC. Sexual dysfunction, depression, and anxiety in young women according to relationship status: an online survey. Trends Psychiatry Psychother. 2013;35(1):55–61. doi: 10.1590/s2237-60892013000100007 [DOI] [PubMed] [Google Scholar]
- 27.Archangelo SCV, Sabino Neto M, Veiga DF, Garcia EB, Ferreira LM. Sexuality, depression and body image after breast reconstruction. Clinics (Sao Paulo). May 30 2019;74:e883. doi: 10.6061/clinics/2019/e883 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 28.Snyder RA, Chang GJ. Insurance Status as a Surrogate for Social Determinants of Health in Cancer Clinical Trials. JAMA Netw Open. Apr 1 2020;3(4):e203890. doi: 10.1001/jamanetworkopen.2020.3890 [DOI] [PubMed] [Google Scholar]
- 29.Sohn H. Racial and Ethnic Disparities in Health Insurance Coverage: Dynamics of Gaining and Losing Coverage over the Life-Course. Popul Res Policy Rev. Apr 2017;36(2):181–201. doi: 10.1007/s11113-016-9416-y [DOI] [PMC free article] [PubMed] [Google Scholar]
- 30.Escarce JJ, Kapur K. Racial and ethnic differences in public and private medical care expenditures among aged Medicare beneficiaries. Milbank Q. 2003;81(2):249–75, 172. doi: 10.1111/1468-0009.t01-1-00053 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 31.Becker G, Newsom E. Socioeconomic status and dissatisfaction with health care among chronically ill African Americans. Am J Public Health. May 2003;93(5):742–8. doi: 10.2105/ajph.93.5.742 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 32.Li W, Li S, Lu P, Chen H, Zhang Y, Cao Y, Li G. Sexual dysfunction and health condition in Chinese doctor: prevalence and risk factors. Sci Rep. Sep 16 2020;10(1):15180. doi: 10.1038/s41598-020-72072-w [DOI] [PMC free article] [PubMed] [Google Scholar]
- 33.Kim JI, Zhu D, Davila J, Lee J, Chubak BM, Melamed ML, Abraham N. Female Sexual Dysfunction as Measured by Low Sexual Frequency is Associated With Lower Socioeconomic Status: An Analysis of the National Health and Nutrition Examination Survey (NHANES), 2007–2016. J Sex Med. Jan 2022;19(1):90–97. doi: 10.1016/j.jsxm.2021.09.014 [DOI] [PubMed] [Google Scholar]
- 34.Madbouly K, Al-Anazi M, Al-Anazi H, Aljarbou A, Almannie R, Habous M, Binsaleh S. Prevalence and Predictive Factors of Female Sexual Dysfunction in a Sample of Saudi Women. Sex Med. Feb 2021;9(1):100277. doi: 10.1016/j.esxm.2020.10.005 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 35.Kiridaran V, Chawla M, Bailey JV. Views, attitudes and experiences of South Asian women concerning sexual health services in the UK: a qualitative study. Eur J Contracept Reprod Health Care. Oct 2022;27(5):418–423. doi: 10.1080/13625187.2022.2096216 [DOI] [PubMed] [Google Scholar]
- 36.Grant SR, Noticewala SS, Mainwaring W, et al. Non-English language validation of patient-reported outcome measures in cancer clinical trials. Support Care Cancer. Jun 2020;28(6):2503–2505. doi: 10.1007/s00520-020-05399-9 [DOI] [PubMed] [Google Scholar]
- 37.Albaba H, Barnes TA, Veitch Z, et al. Acceptability of Routine Evaluations Using Patient-Reported Outcomes of Common Terminology Criteria for Adverse Events and Other Patient-Reported Symptom Outcome Tools in Cancer Outpatients: Princess Margaret Cancer Centre Experience. Oncologist. Nov 2019;24(11):e1219–e1227. doi: 10.1634/theoncologist.2018-0830 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 38.Ahlmark N, Algren MH, Holmberg T, et al. Survey nonresponse among ethnic minorities in a national health survey--a mixed-method study of participation, barriers, and potentials. Ethn Health. 2015;20(6):611–32. doi: 10.1080/13557858.2014.979768 [DOI] [PubMed] [Google Scholar]
- 39.Vujcich D, Roberts M, Brown G, et al. Are sexual health survey items understood as intended by African and Asian migrants to Australia? Methods, results and recommendations for qualitative pretesting. BMJ Open. Dec 8 2021;11(12):e049010. doi: 10.1136/bmjopen-2021-049010 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 40.Konopka JA, Bloom DA, Lawrence KW, Oeding JF, Schwarzkopf RM, Lajam CM. Non-English Speakers and Socioeconomic Minorities are Significantly Less Likely to Complete Patient-Reported Outcome Measures for Total Hip and Knee Arthroplasty: Analysis of 16,119 Cases. J Arthroplasty. Jan 20 2023;doi: 10.1016/j.arth.2023.01.005 [DOI] [PubMed] [Google Scholar]
- 41.Meireles R, Tome G, Pinheiro S, Diogo C. BREAST-Q Translation and Linguistic Validation to European Portuguese. Acta Med Port. Nov 2 2022;35(11):823–829. doi: 10.20344/amp.17427 [DOI] [PubMed] [Google Scholar]
- 42.Willert CB, Gjorup CA, Holmich LR. Danish translation and linguistic validation of the BREAST-Q. Dan Med J. May 1 2020;67(5) [PubMed] [Google Scholar]
- 43.Martinez P, Jimeno J, Hernanz F, Munoz P. Spanish version of the BREAST-Q(R) 2.0 questionnaire-breast reduction module-: Linguistic, cross-cultural adaptation and validation. Cir Esp (Engl Ed). Mar 2023;101(3):232–234. doi: 10.1016/j.cireng.2022.10.016 [DOI] [PubMed] [Google Scholar]
- 44.Lor M, Bowers BJ, Krupp A, Jacobson N. Tailored Explanation: A Strategy to Minimize Nonresponse in Demographic Items Among Low-income Racial and Ethnic Minorities. Surv Pract. Jun 2017;10(3)doi: 10.29115/SP-2017-0015 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 45.Kuehn R, Casaubon J, Raker C, Edmonson D, Stuckey A, Gass J. Sexual Dysfunction in Survivorship; the Impact of Menopause and Endocrine Therapy. Ann Surg Oncol. Oct 2019;26(10):3159–3165. doi: 10.1245/s10434-019-07552-z [DOI] [PubMed] [Google Scholar]
- 46.Scavello I, Maseroli E, Di Stasi V, Vignozzi L. Sexual Health in Menopause. Medicina (Kaunas). Sep 2 2019;55(9)doi: 10.3390/medicina55090559 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 47.Azim HA Jr., Davidson NE, Ruddy KJ. Challenges in Treating Premenopausal Women with Endocrine-Sensitive Breast Cancer. Am Soc Clin Oncol Educ Book. 2016;35:23–32. doi: 10.1200/EDBK_159069 [DOI] [PubMed] [Google Scholar]
- 48.Laudisio D, Muscogiuri G, Barrea L, Savastano S, Colao A. Obesity and breast cancer in premenopausal women: Current evidence and future perspectives. Eur J Obstet Gynecol Reprod Biol. Nov 2018;230:217–221. doi: 10.1016/j.ejogrb.2018.03.050 [DOI] [PubMed] [Google Scholar]
- 49.Chang JM, Kosiorek HE, Dueck AC, et al. Trends in mastectomy and reconstruction for breast cancer; a twelve year experience from a tertiary care center. Am J Surg. Dec 2016;212(6):1201–1210. doi: 10.1016/j.amjsurg.2016.08.020 [DOI] [PubMed] [Google Scholar]
- 50.Yuan R, Zhang C, Li Q, Ji M, He N. The impact of marital status on stage at diagnosis and survival of female patients with breast and gynecologic cancers: A meta-analysis. Gynecol Oncol. Sep 2021;162(3):778–787. doi: 10.1016/j.ygyno.2021.06.008 [DOI] [PubMed] [Google Scholar]
- 51.Santosa KB, Qi J, Kim HM, Hamill JB, Wilkins EG, Pusic AL. Long-term Patient-Reported Outcomes in Postmastectomy Breast Reconstruction. JAMA Surg. Oct 1 2018;153(10):891–899. doi: 10.1001/jamasurg.2018.1677 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 52.Egleston BL, Miller SM, Meropol NJ. The impact of misclassification due to survey response fatigue on estimation and identifiability of treatment effects. Stat Med. Dec 30 2011;30(30):3560–72. doi: 10.1002/sim.4377 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 53.O’Reilly-Shah VN. Factors influencing healthcare provider respondent fatigue answering a globally administered in-app survey. PeerJ. 2017;5:e3785. doi: 10.7717/peerj.3785 [DOI] [PMC free article] [PubMed] [Google Scholar]