Preoperative expectations and quality of life after breast reconstruction: Finnish validation of the BREAST-Q Reconstruction Expectations module

Abstract

Background and Aims:

Patient expectations can influence satisfaction and health-related quality of life (HRQL) after breast reconstruction. The aim of this study was to evaluate both patient expectations before breast reconstruction and HRQL after a 1-year follow-up.

Methods:

A cohort study was performed on patients awaiting delayed breast reconstruction at Helsinki University Hospital in April 2020. The BREAST-Q Reconstruction Expectations module was translated into Finnish following accepted guidelines for preoperative assessment of expectations. One-year outcomes were assessed using the BREAST-Q Reconstruction module. Correlation analyses were performed to evaluate associations between expectations and postoperative HRQL.

Results:

Of 145 patients approached, 57 patients (39%) participated. Median preoperative age was 54 years (interquartile range (IQR) = 47–63). Expectations for coping were high (median = 100, IQR = 68–100). At 1 year, appearance, shape, and clothing fit were expected to return to near normal (median = 69, IQR = 53–91), and donor site appearance and function were expected to normalize (median = 6, IQR = 5–7). At 1 year, 38 patients (67%) completed follow-up. Median scores (IQR) were psychosocial well-being 62 (48–80), satisfaction with breasts 60 (47–76), physical well-being of the chest 85 (64–92), and physical well-being of the abdomen 72 (62–81), indicating generally favorable outcomes. High expectations for coping were associated with better psychosocial well-being postoperatively. In addition, patients expecting more pain reported lower physical well-being of the chest at 1 year.

Conclusions:

Breast cancer patients reported high expectations regarding the upcoming breast reconstruction, and the HRQL after a 1-year follow-up reflected attainment of these goals.

Clinical trial registration:

N/A.

Keywords

Breast cancer breast reconstruction patient-reported outcomes health-related quality of life BREAST-Q

Context and relevance

Breast reconstruction after mastectomy aims not only to restore physical appearance but also to improve the health-related quality of life of patients. Patient expectations before surgery are thought to play a key role in satisfaction and postoperative outcomes. Despite this, studies on patient expectations are still limited in the field of breast surgery, and expectations are not routinely measured in clinical practice.

This study assessed preoperative patient expectations for the first year following breast reconstruction by producing a Finnish translation of the BREAST-Q Reconstruction Expectations module. The HRQL of the patients was assessed 1 year postoperatively using the BREAST-Q Reconstruction module. The relationship between preoperative expectations and postoperative HRQL at 1 year was analyzed. The findings in this study provide insight into how expectations influence postoperative HRQL, highlighting the value of integrating expectation management and shared decision-making into reconstructive breast surgery.

Introduction

Breast cancer is the most common cancer among women in Europe.¹ Mortality rates are declining, emphasizing the importance of health-related quality of life (HRQL).² Mastectomy can reduce the HRQL of patients significantly.³ Whenever clinically appropriate, breast-conserving surgery should be prioritized due to generally more favorable HRQL.⁴ When mastectomy is necessary, breast reconstruction can help counteract the reduction in HRQL.^4,5

Unrealistic preoperative expectations are linked to lesser satisfaction with the outcome and decreased HRQL.^6–8 Numerous studies in elective surgery, especially orthopedic surgery, highlight the importance of patient expectations in patient satisfaction.⁹ This association has also been demonstrated in breast cancer patients, although data are still relatively sparse.^7,8,10

The primary goal of breast reconstruction is to improve HRQL and restore body image.^6,8 Lack of information preoperatively may induce anxiety in patients undergoing breast reconstruction.¹¹ Underestimation of satisfaction after breast reconstruction is common and may lead to deciding against reconstruction.¹² Since reconstruction improves patient satisfaction and HRQL, patient education and shared decision-making are essential to ensure the best foundation for recovery. The BREAST-Q Reconstruction Expectation module is designed to assess patient expectations for the upcoming breast reconstruction process.⁸

The aim of this study was to assess preoperative patient expectations for the first year following breast reconstruction and compare the expectations to the HRQL of the patients after 1 year of follow-up. To enable this, a Finnish translation of the BREAST-Q Reconstruction Expectations module was produced.

Methods

A cohort study was performed on patients awaiting breast reconstruction surgery in April 2020 at Helsinki University Hospital, Department of Plastic Surgery. The BREAST-Q Version 2.0: Reconstruction Expectations module was used to evaluate expectations. All patients had previously visited the outpatient clinic for counseling and received written patient information on breast reconstruction.

The Expectations module was translated into Finnish according to the instructions of the developers and the International Society of Pharmacoeconomics and Outcomes Research (ISPOR) guidelines.¹³ Two native Finnish speakers fluent in English and familiar with the subject performed the forward translation, followed by a professional back translation. The translation was reviewed against the original, and possible ambiguities were corrected. Surgeons reviewed the final version, and 25 patients provided feedback via a postal survey.

Patients received a questionnaire package including study information, the BREAST-Q Reconstruction Expectations, a consent form, and a prepaid return envelope. Only preoperative questionnaires were included in the expectation analysis. Participants received the BREAST-Q Reconstruction module 1 year postoperatively.¹⁴ Questionnaires were resent once if unanswered. All participants gave written informed consent for participation. Medical records were viewed for health and disease profiles.

The Reconstruction Expectations module consists of five scales assessing breast appearance and outcome, support from medical staff, pain, recovery, coping, and expectations about self-perception and sexuality. One year postoperatively, HRQL was assessed with the BREAST-Q Reconstruction module version 2.0. The patients completed the questionnaire modules relevant to the surgery performed.¹⁴

BREAST-Q scores were rescaled to 0–100 using the nonlinear Rasch transformation method according to the instructions of the authors.¹⁵ Missing values were imputed with the mean of available responses if <50% were missing, and scales with >50% missing were excluded from further analysis. According to the original instructions, some scales were not rescaled, but the total score was directly calculated as the sum of the answers on the scale analyzed. For some scales, patient responses marked as “I do not know” were imputed using the median value of the remaining items within the scale.

Statistical analysis was conducted using IBM SPSS version 29.¹⁶ Results are presented as medians with interquartile range (IQR, 25th and 75th percentile). Group differences were analyzed using independent-samples t-tests, with Levene’s test applied to assess equality of variances. Correlation analyses were performed to evaluate associations between preoperative expectations scales and postoperative BREAST-Q scales, using Spearman’s ρ correlation with 95% confidence intervals (CIs). Preoperative and postoperative scales addressing comparable topics were included in the analysis. The following scales were examined: expectations regarding information and satisfaction with information; expectations for coping and psychosocial well-being; expectations for pain and physical well-being of the chest; expectations regarding appearance and satisfaction with the breast; and expectations related to abdominal recovery and physical well-being of the abdomen.

The study protocol was approved by the Helsinki University Hospital ethics committee (HUS/2737/2017).

Results

A total of 145 patients were identified. The translation process of the BREAST-Q Reconstruction Expectations questionnaire was straightforward. The back translation and review did not lead to any corrections. The comments from the 25 patients in the pilot study did not yield any changes.

Of all patients approached, 57 (39%) completed the preoperative questionnaire. The median age, collected preoperatively, was 54 years (IQR = 47–63). The median body mass index (BMI) was 26 (IQR = 24–28). In 43 patients (75%), mastectomy was performed due to breast cancer, while seven patients (12%) underwent a risk-reducing mastectomy due to the presence of a cancer-associated gene variant, and seven patients (12%) were operated due to having both a cancer and carrying a cancer-associated gene variant. All patients were planned for autologous breast reconstruction, with or without the additional use of implants. No solely implant-based reconstructions were included in this study. All participants of the first phase of the study were invited to take part in the follow-up. The 1-year follow-up was completed by 38 patients (67%). Participant characteristics are shown in Table 1.

Table 1.

General characteristics of the study cohort.

Variable	Median (IQR)
Age (years)	56 (48-63)
BMI (kg/m²)	26 (24-28)
Variable	N^a (%)
Active smoker
Yes	3 (5)
No	54 (95)
ASA-classification^b
ASA I	39 (68)
ASA II-III	18 (32)
Mastectomy due to
No cancer
Presence of cancer-associated gene variant	7 (12)
DCIS	2 (4)
Invasive breast cancer
NST	33 (58)
Lobular carcinoma	8 (14)
Other	7 (12)

IQR: interquartile range; BMI: body mass index; DCIS: ductal carcinoma in situ; NST: no specific type.

Number of patients.

ASA I: normal, healthy patient; ASA II: patient with mild systemic disease; ASA III: patient with severe systemic disease.

Expectations for the reconstruction process

In total, 56 patients (98%) answered how much information they wanted on the upcoming surgery, assessed on a 1–3-point scale. The median value was 2 (IQR = 2–3), with higher scores indicating a greater desire for information. Similarly, 56 patients (98%) answered the question on expected contribution to decision-making in the process, graded on a 1–3-point scale. Higher scores reflected a greater willingness to participate in the decision-making. The median was 2 (IQR 2–2.8). The results are presented in Table 2.

Table 2.

Results of the BREAST-Q Reconstruction Expectations module: information, decision-making, support from medical team, pain during first week after surgery, coping during the first year after surgery, breast appearance, and function of abdomen.

	Scale	Median (IQR)	Range	N^a (%)
Information	1-3	2 (2-3)	1-3	56 (98)
Decision-making	1-3	2 (2-2.8)	1-3	56 (98)
Support	0-100	54 (38-78)	17-100	55 (97)
Pain	0-100	64 (54-80)	14-100	51 (90)
Coping	0-100	100 (68-100)	42-100	56 (98)
Appearance	0-100	69 (53-91)	0-100	55 (97)
Abdomen	4-12	6 (4.5-6.5)	4-12	25 (44)

IQR: interquartile range.

Number of patients.

Fifty-six patients (98%) responded about expected complications, assessed on a 1–3-point scale, where lower scores reflected higher expectations for postoperative complications. Only four patients (7%) considered a complication likely, while 13 patients (22%) considered a postoperative complication very unlikely (Table 3). Fifty-five patients (97%) answered the question on expected support from the medical staff, assessed on a scale from 0 to 100, with higher scores indicating more expected support. The median value was 54 (IQR = 38–78). Fifty-one patients (90%) answered the questions on expected pain 1 week postoperatively. On a 0–100-point scale, the median value was 64 (IQR = 54–80) (Table 2).

Table 3.

Results of the BREAST-Q Reconstruction Expectations module: patient expectations of postoperative complications, appearance after expander insertion, pain after expander insertion, and pain related to each expansion.

Postoperative complication	N^a (%)
Likely	4 (7)
Unlikely	18 (31)
Very unlikely	13 (22)
I do not know	21 (36)
Expander: appearance chest
Flat	3 (27)
Small swelling	4 (36)
Fully formed breast	1 (9)
I do not know	3 (27)
Expander: pain immediately
Constant pain	1 (9)
Tight and uncomfortable	6 (55)
No discomfort	1 (9)
I do not know	3 (27)
Expander: pain expansion
Pain every time	2 (18)
Some discomfort	3 (27)
No discomfort	3 (27)
I do not know	3 (27)

Number of patients.

Expectations for the use of a tissue expander

The scales regarding the tissue expander were answered by patients with planned latissimus dorsi (LD)-flap reconstruction with the additional use of implants (n = 11, 19%). Most patients (n = 3, 27%) expected small swelling after insertion. Six patients (55%) expected to feel tightness and discomfort. The results are presented in Table 3.

Expectations for coping with the breast reconstruction process

A total of 56 patients (98%) responded to the scale assessing expectations for emotional recovery and return to normal life after 1 year following the breast reconstruction. On a scale from 0 to 100, with higher scores representing greater expectations, the median value was 100 (IQR = 68–100), indicating strong confidence in the recovery (Table 2).

Expectations for appearance in clothing after breast reconstruction

Fifty-five patients (97%) took part in the assessment of expectations regarding breast appearance, shape, and clothing fit. This scale was assessed on a 0–100-point scale, with higher scores indicating higher expectations. The median value for this scale was 69 (IQR = 53–91) (Table 2).

Expectations for recovery of abdominal wall function after breast reconstruction

In total, 25 patients (44%) answered the part of the questionnaire regarding expectations for the recovery of the abdominal wall function, graded on a 4–12-point scale with lower scores indicating more satisfactory outcomes. The median value was 6 (IQR 5–7), suggesting generally positive expectations (Table 2).

HRQL at 1-year follow-up

A total of 38 patients (67%) completed the follow-up at 1 year. There was a significant age difference between patients who completed the follow-up and those who did not. The mean difference was 7 years (95% CI = 0.84 to 13.1, p = 0.027), with the non-responders being older (mean age 59 versus 52 years). Patients who finished the follow-up scored higher in the preoperative scale on expected support compared to non-responders (mean difference = −15.5, 95% CI = −27.2 to −3.8, p = 0.01). In other preoperative scales, no significant differences in scores between patients depending on the completion of the follow-up were detected (p-values > 0.5).

Psychosocial and sexual well-being

All patients (n = 38, 100%) completed the scale on psychosocial well-being. The median value was 62 (IQR = 48–80). Higher expectations for coping with the reconstruction process were associated with superior psychosocial well-being at 1 year (Spearman’s ρ = 0.62, p < 0.001, 95% CI = 0.36 to 0.79). (Table 4) The scale for sexual well-being was completed by 36 patients (95%). The median score was 53 (IQR = 37–70).

Table 4.

Correlation of preoperative expectations and postoperative BREAST-Q scores.

Preoperative expectation module	N^a (%)	Postoperative reconstruction module	N^a (%)	Spearman’s ρ^b	CI^c (95%)	p-value
Information	56 (98)	Satisfaction with information	38 (100)	-0.2	-0.5 to 0.1	0.2
Coping	56 (98)	Psychosocial well-being	38 (100)	0.6	0.4 to 0.8	<0.001
Pain	51 (90)	Physical well-being: Chest	38 (100)	-0.4	-0.6 to -0.03	0.03
Appearance	55 (97)	Satisfaction with breasts	30 (79)	0.1	-0.3 to 0.5	0.5
Abdomen	25 (44)	Physical well-being: Abdomen	18 (47)	-0.4	-0.8 to 0.2	0.2

Number of patients.

Spearman’s ρ correlation coefficient (range −1 to +1).

95% Confidence interval.

Satisfaction with breast and physical well-being: chest

Thirty patients (79%) completed the scale on satisfaction with breasts. The median value was 60 (IQR = 47–76). No correlation between preoperative expectations on appearance and postoperative satisfaction with breast was found (p = 0.25) (Table 4). All patients (n = 38, 100%) completed the question on physical well-being of the chest, with a median value of 85 (IQR = 64–92). Higher preoperative expectations for pain correlated with lower physical well-being of the chest postoperatively (Spearman’s ρ −0.37, p = 0.03, 95% CI = −0.64 to −0.028) (Table 4).

Satisfaction with abdomen and physical well-being: abdomen

Patients who underwent breast reconstruction using abdominal flaps answered the scales regarding the physical well-being and satisfaction with the abdomen. In total, 19 patients (50%) participated in the physical well-being of abdomen scale, with a median of 72 (IQR = 62-81). Preoperative expectations for the recovery of the abdominal wall did not affect the physical well-being of the abdomen postoperatively (p = 0.18) (Table 4). The satisfaction with abdomen scale was answered by 18 patients (47%). The median value was 9 (IQR = 8-10) on a 3–12-point scale, with higher scores indicating more satisfactory outcomes.

Satisfaction with care given

Satisfaction with care was assessed with four scales, each ranging from 0 to 100, with higher scores indicating greater satisfaction. These were answered by all patients (n = 38, 100%). The median value (IQR) for satisfaction with information was 63 (51–77). There was no association between preoperative expectations for information and satisfaction with information postoperatively (p = 0.25) (Table 4). The preoperative expectations for support did not correlate with postoperative satisfaction with the surgeon (p = 0.52), medical team (p = 0.43), or office staff (p = 0.44).

Discussion

Patient expectations are increasingly valued in surgical practice. In breast cancer surgery, HRQL has become a key measure for evaluating the impact of surgical interventions.^17,18 This study underscores the importance of patient expectations as part of a comprehensive assessment of breast cancer patients and demonstrates that patient expectations align with HRQL outcomes after 1 year.

Preoperatively, patients wanted to be well-informed (median = 2, scale = 1–3) and involved in decision-making (median = 2, scale = 1–3). This is consistent with previous studies, highlighting the significance of preoperative counseling and shared decision-making.^19,20 Patients expected to receive support throughout the process (median = 54, scale = 0–100). At 1 year, satisfaction with care was high, including satisfaction with information (median = 63), surgeon (median = 92), and medical team (median = 100). These findings suggest that preoperative expectations regarding information, involvement, and support are largely met.

Preoperative expectations for overall recovery were high (median = 100), in line with earlier findings.²¹ The psychosocial well-being scale of the Reconstruction module addresses related aspects, including body image, emotional health, and self-esteem. High preoperative recovery expectations correlated with better psychosocial well-being at follow-up. At 1 year, the median for psychosocial well-being was 62. Notably, this is lower than the normative mean, 71, reported in healthy individuals without a history of breast cancer or breast surgery.²² This score falls below previously reported baseline values for the BREAST-Q, based on patients with newly diagnosed breast cancer, before surgical interventions.^22–24 This exceeds the minimal important difference (MID) of 4 for this scale.²⁵ Undergoing mastectomy without reconstruction has been shown to negatively affect psychosocial well-being, highlighting the emotional impact of the procedure.²⁶ This brings emphasis to the importance of offering breast reconstruction to all eligible patients, considering the potential psychosocial benefits of reconstruction. When feasible, autologous reconstruction may offer particular advantages, such as superior satisfaction with breasts and longer durability.^27,28

Preoperatively, patients anticipated moderate postoperative pain in the first postoperative week (median = 64). This is supported by previous studies, suggesting that patients are generally well-informed about postoperative pain.^21,29 The Reconstruction module’s scale for physical well-being of the chest evaluates pain and discomfort in the chest. At 1 year, the median was 85, indicating a low level of symptoms. Although being lower than the normative mean value, 93, and the difference exceeds the MID (3) for this scale, the absolute median score of 85 still reflects a high level of physical well-being.^22,25 The physical well-being of the chest is negatively affected by breast cancer alone, even before any surgical intervention, indicating that it may be influenced by psychological and emotional aspects in addition to physical symptoms.²³ Supporting this, patients expecting more pain when assessed preoperatively scored lower in physical well-being of the chest postoperatively.

Preoperative expectations for the aesthetic results and clothing fit were high (median = 69). No association between preoperative aesthetic expectations and postoperative satisfaction with breasts was found. One year postoperatively, the median satisfaction with breasts was 60, like earlier observations.^22,24,26 Interestingly, this value exceeds the normative mean value, 58, for this scale, although it does not surpassing the MID (4).^22,25 This suggests that the expectations for breast satisfaction were met, with 1-year satisfaction surpassing the normative values.

Abdominal wall function was expected to be close to normal 1 year postoperatively (median = 6, scale = 4–12). At 1 year, the median for physical well-being of the abdomen was 72, reflecting high satisfaction and low donor site morbidity. Although this value is slightly lower than the normative mean score, 78, for this scale, it aligns with previous results.^22,30 The postoperative median remains close to the normative value, suggesting that patient expectations for near-normal abdominal wall function are largely met. Preoperative abdominal expectations did not correlate with postoperative outcomes.

The postoperative values in our cohort for psychosocial well-being, physical well-being of the chest, and physical well-being of the abdomen were lower than the normative mean values.²² Several studies have demonstrated the negative effect of mastectomy on HRQL.^24,26,31 The positive effect of breast reconstruction on HRQL has also been widely recognized.^4,5 Our study population reported lower psychosocial well-being, satisfaction with breasts, and physical well-being of the abdomen, but higher physical well-being of the chest than a similar study on 1-year HRQL following delayed autologous breast reconstruction.³² Persisting emotional and physical burdens of breast cancer may explain the lower HRQL.^33,34 Preoperative BREAST-Q reference values established for patients diagnosed with breast cancer suggest that breast cancer negatively affects physical well-being of the chest, while other domains resemble healthy controls. In our study, the physical well-being of the chest exceeded the preoperative value for cancer patients (82).²³

Unmet or unfulfilled expectations in patients undergoing breast surgery have been linked to poorer satisfaction postoperatively and may lead to decisional regret.³⁵ Evaluating preoperative patient expectations allows for improved patient counseling and shared decision-making and can increase patient satisfaction.⁶ Realistic expectations are more likely to align with the true postoperative HRQL, thereby enhancing patient satisfaction and minimizing disappointment. Maintaining attainable expectations may lessen anxiety and postoperative stress, as patients are better prepared for the recovery period and outcome. When expectations match the outcome, patients may find it easier to adjust to pain, scarring, and other postoperative challenges, as well as the aesthetic result.^6,36 Ideally, this can help narrow the gap between postoperative outcomes and the normative BREAST-Q reference values, providing better satisfaction and HRQL in patients undergoing breast reconstruction.

The preoperative expectations in this study were cautiously optimistic and aligned with previous findings, although expectations for appearance were slightly lower.^21,29 The longer timeline to the final result with delayed reconstruction might contribute to the more conservative expectations for aesthetic results in a 1-year timeframe.³⁷ Delayed breast reconstruction has also been linked to negative expectations for postoperative pain and recovery.³⁷ Patients completing the follow-up were younger than the non-responders. This may have influenced the outcomes, as younger age has been associated with lower HRQL.³⁸ The relatively small cohort size may limit the generalizability and contribute to larger variability in responses.

In this study, the answers to the BREAST-Q Reconstruction Expectations module were collected before the reconstructive surgery. The patients were recruited from the waiting list for breast reconstruction. All patients had previously visited the outpatient clinic for a consultation regarding reconstruction. The patients had also received a written patient guide with information on available reconstruction methods. In addition to outpatient clinic visits, patient information days are organized in our unit to offer further information and support to patients through the reconstruction process. Future research could investigate whether participation in these sessions affects patient expectations and whether the HRQL postoperatively aligns with these expectations.

The strengths of this study include the use of a validated, breast-specific PROM for assessing expectations and evaluating HRQL postoperatively. Although the importance of patient expectations on HRQL and outcomes has been demonstrated in other surgical areas, these studies are still limited in breast surgery. The Finnish BREAST-Q Reconstruction Expectations was translated and validated according to ISPOR guidelines.¹³ Unlike previous studies dominated by implant-based reconstruction,^8,29 all patients in this study underwent autologous reconstruction, with or without the addition of breast implants. This reflects the practice at the authors’ department, with implant-based reconstructions conducted in the Breast Surgery Unit rather than the Department of Plastic Surgery.

This study is limited in strength due to the small sample size and the cross-sectional design. Despite including all patients awaiting reconstructive surgery during this time, the response rate was fairly low, increasing the risk of selection bias. The somewhat modest response rate may partly be explained by the off-clinic recruitment during an emotionally demanding period while patients were awaiting major reconstructive surgery, with only one reminder sent by mail. However, the study cohort reflects the patient population undergoing breast reconstruction at the authors’ unit. As results were self-reported, expectations and postoperative HRQL of non-responders remain unknown. Numerous studies have reported preoperative expectations and long-term HRQL results after breast reconstruction.^4,8,24,29,39 To the authors’ knowledge, no previous studies have combined preoperative expectations measured with a validated, breast-specific PROM, such as the BREAST-Q Reconstruction Expectations module, with long-term follow-up of HRQL. The findings in this study should be further validated in a larger cohort.

Footnotes

Acknowledgements

The authors would like to thank Leena Caravitis and the breast cancer nurses for their assistance with data collection and processing.

Author contributions

All authors contributed to the study concepts and study design. Data acquisition was performed by Charlotta Kuhlefelt and Pauliina Homsy. Charlotta Kuhlefelt and Pauliina Homsy were responsible for data and algorithm quality control, data analysis and interpretation, and statistical analysis. The manuscript was drafted by Charlotta Kuhlefelt. All authors contributed to manuscript editing and manuscript review. The final version of the manuscript was approved by all authors.

Availability of data and materials

The datasets generated and analyzed during the current study are not publicly available due to patient confidentiality. The data are available from the corresponding author on reasonable request.

Declaration of conflicting interests

The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work was supported by funding from the Helsinki University Hospital Musculoskeletal and Plastic Surgery Research Centre.

Ethics approval

The current study was conducted in accordance with the principles of the Declaration of Helsinki, and the approval was granted by the Helsinki University Hospital Ethics Committee (HUS/2737/2017).

ORCID iDs

Charlotta Kuhlefelt

Pauliina Homsy

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