Women’s satisfaction and body image long-term after risk-reducing mastectomy – the partners’ perspective

doi:10.21203/rs.3.rs-2630820/v1

Purpose

To investigate partners’ perception of women’s perception regarding long-term psychological outcomes after risk-reducing mastectomy (RRM) and immediate breast reconstruction (IBR) by investigating their perception of the women’s long-term evaluation regarding satisfaction with aesthetic outcome, body image, and sexuality, and to compare partners’ and women’s levels of anxiety/depressive symptoms and health-related quality of life (HRQoL).

Methods

Partners responded to the same questionnaires as the women without modifications. The partners responded to HAD and SF-36 from their own perspective, and the remaining questionnaires (EORTC QLQ-BRR26, BIS, and SAQ) from their perception of how the women would have responded. The responses of the partners were compared with the responses of the women, as well as with the HRQoL of the normative Swedish population.

Results

Thirty-six (60%) partners participated. The partners’ perception of the women’s satisfaction with the aesthetic outcome was lower compared with the women’s own perceptions (p<0.05). Partners’ perception of women’s perceived level of body image problems was higher than the women’s response (p<0.05). There was an agreement in the perception of the sexuality-related questions. Partners and women had in general higher levels of HRQoL compared with the age-standardised normative Swedish population.

Conclusion

This study, albeit small, showed that partners overestimated women’s dissatisfaction with long-term aesthetic outcome and body image, while there were no discrepancies between the two groups regarding aspects of sexuality. Both groups demonstrated high levels of HRQoL long-term after RRM and IBR. RRM is a personal choice, but knowledge about long-term effects involve both women and their partners.

breast cancer

risk-reducing mastectomy

partner’s perception

quality of life

body image

sexuality

Since the 90s, women with a confirmed BRCA1/2 mutation, or an estimated high hereditary risk of breast cancer, have been offered bilateral risk-reducing mastectomy (RRM) and immediate breast reconstruction (IBR). RRM is considered to decrease the risk of breast cancer with more than 90% in asymptomatic women [1–5].

In 1997, a prospective long-term follow-up project was initiated at Karolinska University Hospital in Stockholm, Sweden, investigating how RRM and IBR were associated with the women’s health-related quality of life (HRQoL), anxiety, and depressive symptoms. Levels of satisfaction with the aesthetic outcome and perception of body image problems were also investigated. A number of studies concerning these aspects have been published by our group and others since then. A systematic review on psychosocial consequences after RRM revealed persistent HRQoL, and no negative impact on anxiety and depression [6]. In addition, participating women also reported high levels of satisfaction with the aesthetic outcome of RRM and IBR. Body image problems was, however, reported by our group and others in both short- and long-term follow-up studies [7–11]. Similarly, the sexual well-being and somatosensory function have been found to be negatively affected [6–8,12].

The decision for RRM is highly personal, albeit body image and sexuality are essential aspects of intimate shared relationship. Nevertheless, there are barely any studies investigating how the partners perceive these aspects [13–15]. In a recent review, only one out of 17 studies explored the partner’s experiences with RRM [16]. Other studies included partners to women who had undergone mastectomy due to breast cancer. In summary, the partners frequently acknowledged the loss of their spouse’s breast(s), but they stated that the health of the women was paramount [16]. One study about partners of women who had undergone RRM, showed that the partners’ evaluation of the women’s physical appearance, and not the women's own evaluation, was a significant statistical predictor of the breast cancer patients’ marital adjustment [17]. Another qualitative study, including ten paired couples interviewed at four months to three years postoperatively, identified several areas of concern for women and their partners after RRM (9/10 with IBR) relating to body image, surgical outcome, and psychosocial issues [18]. The Karolinska studies were recently updated with a 6-18 year follow up showing that HRQoL, anxiety and depressive symptoms remained unchanged. However, body image was still affected negatively [19].

The aim of the present study was to investigate, in the long-term follow-up study, the partners’ perception of the women’s evaluation of long-term satisfaction with the reconstructive outcome, body image, and aspects related to sexuality. The women’s’ and partners’ self-reported anxiety, depressive symptoms and HRQoL were compared to age- and sex-adjusted data from the Swedish population.

Participants and procedure

Women (n=200) with an increased risk of hereditary breast cancer who had participated in the previous prospective psychosocial studies between 1997 and 2010 at Karolinska University Hospital in Stockholm, Sweden [7,8] were invited to participate in the prospective long-term follow-up study 6–20 years after RRM and IBR [19]. Included were women with two different medical backgrounds: (i) previously asymptomatic women, and (ii) women who had previously been treated for breast cancer and underwent contralateral and/or complementary RRM and IBR after previous breast cancer surgery. The most common surgical technique used in RRM was skin-sparing mastectomy. Ninety-five percent of the patients had implant based reconstructions.

The women were asked to provide the name and address of their partner if they wanted their partner to be invited to the current study. Subsequently, invitation letters, including the questionnaires, and a return envelope, were sent to the partners. One reminder was sent after one month if no response was received. Both the partners and the women were informed that no disclosure of participation would occur and only paired respondents of women and partners were included in the analyses.

Instructions and instruments

The same set of questionnaires that the women had received were sent to the partners without any modifications. The partners were instructed from whose perspective they were to respond to the different parts of the questionnaires (Table 1):

From their perception of the women’s evaluation: The European Organisation for Research and Treatment of Cancer Breast Reconstruction Questionnaire (EORTC QLQ-BRR26), the Body Image Scale (BIS), and the Sexuality Activity Questionnaire (SAQ).

From their own perspective: The Hospital Anxiety and Depression (HAD) scale and the Swedish Short Form-36 Health Survey (SF-36).

The European Organisation for Research and Treatment of Cancer Breast Reconstruction Questionnaire (EORTC QLQ)-BRR26 assesses the satisfaction of results after breast reconstruction using 26 items. Scores range from 1 to 4 (“Not at all” to “Very much”). Validation and reliability tests have been performed in a set of breast cancer patients after breast reconstruction, including Swedish patients [20–22].

The Body Image Scale (BIS) evaluates the impact of surgery on physical and sexual attractiveness, femininity, satisfaction with body and scars, body integrity, self-consciousness, and avoidance behaviour after surgery for cancer patients [23]. For each item, the scores range from 0 to 3 (“Not at all” to “Very much”). Each patient receives a total BIS score between 0 and 30 (higher scores represent more problems).

Sexual Activity Questionnaire (SAQ) measures sexual activity in terms of “Pleasure” (desire, enjoyment, and satisfaction), “Discomfort” (dryness and pain), and “Sexual habit”. This 10-item scale has been shown to be a valid and reliable instrument for the assessment of women’s sexual functioning [24].

The Hospital Anxiety and Depression (HAD) scale assesses anxiety (7 items) and depressive symptoms (7 items), scored 0 to 3. The total score per scale ranges between 0 to 21, with clinical cases of either anxiety or depressive symptoms considered at ≥11 points, possible clinical cases at 8 to 10 points, and <8 points as within normal levels [25]. Validation of the Swedish HAD has been performed against breast cancer patient diaries [26].

Short Form (SF)-36 measures HRQoL using 36 items, constituting eight domains: “Physical functioning”, “Role physical”, “Role emotional”, “Bodily pain”, “General health”, “Social functioning”, “Vitality”, and “Mental health” [27]. Zero to 100 scales (higher scores represent higher functioning) were created based on the mean scores for each domain. The Swedish version has shown good psychometric properties, and normative data from the Swedish population are available for comparison [28].

Statistical analysis

Expected mean scale scores for the SF-36 scales were calculated using indirect standardisation with age and sex distributions from the study cohort and mean reference scores from the normative Swedish population [28]. Paired differences – between women and partners – were tested using the paired t-test. Results are presented as mean paired differences together with 95% confidence intervals. No adjustments were performed for multiple testing.

Sixty (41%) out of the 146 women who participated in the long-term follow-up study provided the partners’ addresses (Fig. 1).

Thereafter, 36 (60%) out of the 60 invited partners responded and provided information about their marital status and the length of their relationship. Specifically, 34 male and two females responded. Twenty-five (69%) women had undergone bilateral RRM and IBR, and 11 (31%) contralateral/complementary RRM and IBR after previous breast cancer treatment (Table 2).

Satisfaction with the results of the breast reconstruction (EORTC QLQ-BRR26)

Women were statistically significantly more satisfied than their partners perceived "cosmetic result of the breasts" (p=0.04, Table 3). There were no other statistically significant differences found between the women and their partners’ perceptions concerning satisfaction with the results of the breast reconstruction.

Body image (BIS)

Overall, a larger proportion of partners perceived that the women experienced unsatisfactory body image than the women reported themselves (Fig. 2). The difference was statistically significant regarding the items “Dissatisfied with body” (p=0.04) and “Body less whole” (p<0.01). The proportion of partners who perceived that the women felt “Less sexually attractive”, “Dissatisfied with the body”, and “Less physically attractive” was the largest among all items for these three issues, which corresponded to the three main body image problems reported by the women themselves. Furthermore, a statistically significant difference was found between the total mean BIS score between women and partners (p=0.04, Table 3). In other words, the women reported statistically lower levels of problems than what their partners assumed.

Sexuality (SAQ)

There were some discrepancies between partners and women responses concerning status of their “current intimate relationship” and “current active sex-life”. For instance, only five out of 15 couples selected the same statement as the reason to why the women perceived that they did not have a “current active sex-life”. Nevertheless, there were no statistically significant differences between the partner’s perception compared to the women’s own evaluation regarding the main items “Pleasure”, “Discomfort”, or “Habit” (Table 3).

Anxiety and depression (HAD)

No statistically significant differences were found between the women and their partners concerning anxiety (p=0.2) or depression (p=0.1, Table 3).

Health-related quality of life (SF-36)

In general, the women scored clinically significantly lower levels of HRQoL than their partners regarding “General health”, “Physical role”, “Social functioning”, and “Emotional role” (Table 3). The difference for the first three subscales mentioned were all of small clinical significance, whereas the difference in “Emotional role” was of moderate clinical significance. Both the women and their partners appeared to score higher on most SF-36 subscales compared to the age- and sex-adjusted normative data from the Swedish population (Fig. 3).

The present study explored the partners’ perception of the women’s satisfaction with their breast reconstruction, body image, and sexuality long-term after RRM and IBR. In addition, comparisons were made regarding the partners’ and women’s levels of anxiety, depression, and HRQoL. The partners seemed to have perceived that the women were less satisfied with the reconstructive results than the women had reported themselves. Similarly, the partners overestimated the level of body image problems. In contrast, there was no difference regarding the perception of the women’s sexual activities. Similar levels of HRQoL, anxiety, and depressive symptoms were found among both partners and women. Women scored, however, clinically significantly lower levels on four out of eight of the HRQoL subscales. Nonetheless, both groups reported somewhat higher levels of HRQoL on most subscales compared to age- and sex-adjusted scores from the Swedish normative population.

The EORTC QLQ-BRR26 and BIS questionnaires were developed to be used by female patients, possibly making some questions difficult for the partners to answer. One explanation to the differences in responses might be that the women have had time to adapt and accept the aesthetic outcome during the 6–18 years since the RRM and IBR, taking into account the benefit of not having to worry about breast cancer [7,29]. Both parties reported that the (sexual and physical) attractiveness and dissatisfaction with the body were the most prevalent body image problems. Similar results were reported in a qualitative study, where 50% of the men felt that their wives were less attractive after the mastectomy, and 30% of the men were dissatisfied with the physical appearance [17]. An updated qualitative exploration might address other items of relevance for this patient and partner group. In contrast, in a study about male attitudes on sexuality and partnership with female BRCA mutation carriers, the partners felt the same level of attraction to their women after RRM and IBR [9]. As presented earlier, the women in our cohort reported body image problems in the prospective long-term follow-up study [11]. The current findings support the validity of these statements as their partners reported that the women experienced problems in the same direction. Similar findings were described in a recent quantitative study including 11 breast cancer patients and their partners, specifically that a strong positive correlation was observed between the partner and patient satisfaction with the aesthetic outcome of the breast reconstruction after mastectomy [30]. Subgroup analyses comparing women with and without a previous breast cancer diagnosis were not possible in this present study due to the small sample size.

The questions in SAQ are divided into two sections, where the first section contains several intimate questions about sex-life and intimacy. The second section covers the aspects of ‘Pleasure’, ‘Discomfort’, and ‘Habit’. Although there were no statistically significant differences between the women and their partner’s scoring regarding the aspects in the second section, the results from the first section exemplifies the difficulties in fully understanding one another, even among couples in a cohort with a mean relationship length of 21 years. Varying results from a few other studies exploring the perceptions of couples’ sexual satisfaction and the accuracy of judgement in romantic relationships have been published [31,32]. In these studies, strong correlations with the length of the relationship could not be seen.

In a large meta-analysis, female partners/patients in partner-patient couples reported more distress than male partners/patients [33]. Interestingly, the levels of anxiety and depressive symptoms were low among both the women and their partners in our study and did not differ significantly. Our results may suffer from selection biases. For example, since only coupled participants were included, this cohort of men and women might represent a group with low levels of emotional problems. Nonetheless, neither single or partnered women reported levels of anxiety and depressive symptoms above what was considered as “within normal levels of problems” in our recent long-term follow-up study [11]. Another possible selection bias might have occurred when, and if, some women actively chose not to invite their partners to this study. This might imply that the present cohort consists of a more involved or concerned group of women and partners.

For women with a hereditary increased risk for breast cancer, reducing the risk of developing breast cancer without negatively affecting their HRQoL is of great importance. Furthermore, their partners might also be affected by the RRM and IBR. The partners in our small study population reported higher levels of HRQoL in general compared with the age-standardised Swedish population. In a review about men’s experiences of their partner’s mastectomy, the men requested more tailored information [16]. The review stated that “effective information giving contributes to effective coping strategies helping men to better support their partner affected or at risk for breast cancer, leading to enhanced psychological and emotional well-being in couples”. Therefore, the results of the present study can be used for both the partners and the women when informing couples about the long-term consequences of RRM and IBR.

The present study has some limitations as well as strengths. The first limitation is the relatively low response rate among the partners. In addition, an unknown number of women might have had a partner but chose not to provide us with the contact information of that person. As a result, the conclusions from this study should be drawn with caution due to possible selection biases. The sample was also too small to allow for further subgroup analyses, e.g., comparison between couples where the woman had previous breast cancer or not. On the other hand, because the Since the current study occurred 6–18 years post operatively, a subgroup analysis of whether having had previous breast cancer or not might be of less significance. We found that the women in our study (with or without breast cancer prior to RRM and IBR) actually scored higher levels of HRQoL on most subscales than the age-standardised female normative data in the Swedish population [28]. The average time between the return of questionnaire responses from the women and the partners was 44 days. The possible effect on the interpretation of the results is most likely negligible when put into context of long follow-up period.

The strengths of the study include the use of validated questionnaires as well as the study design, in which the woman was asked to provide us with her partner’s name and address. We consider this the most ethical way to approach the partners, although this design might have led to a selection bias. Nevertheless, the possibility of confirmation bias was decreased by ensuring the partners that the women would not be informed about whether they participated or not.

In this study, the results of the partners’ perspective of the women’s evaluation regarding long-term psychosocial outcomes after RRM and IBR showed that partners tended to overestimate the women’s level of dissatisfaction with the aesthetic outcome and the level body image problems. Nevertheless, aspects regarding the sexuality were rated similarly by both the partners and the women. They also had similar levels of HRQoL, anxiety, and depressive symptoms. Both partners and women demonstrated high levels of HRQoL long-term after RRM and IBR when compared to the age- and sex-standardised normative data. These findings can be of use when informing women and their partners during the pre- and postoperative consultations. Further studies are needed to evaluate partners perspective after RRM and IBR.

Funding

This study received financial support from the Swedish Cancer Society, Swedish Research Council, Radiumhemmets forskningsfonder, and The Breast Cancer Foundation Research Fund.

Competing interests

The authors have no relevant financial or non-financial interests to disclose.

Ethics approval

The study was approved by the Regional Ethics Committee in Stockholm (dnr 2015/735-31/4).

Consent to participate

Informed consent was obtained from all individual participants included in the study.

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Table 1 Respondents and response perspectives to questionnaires

Table 2 Demographic data of women and partners

Variable	Women	Partners
Variable	n (%)	n (%)

Sex
Male		34 (94)
Female	36 (100)	2 (6)

Type of risk-reducing mastectomy
Bilateral	25 (69)
Complementary/contralateral	11 (31)

Age at return of questionnaires (years)
Mean [range]	50.6 [35–72]	52.7 [34–74]
<35	0 (0)	1 (3)
35–44	11 (31)	10 (28)
45–54	15 (42)	12 (33)
55–64	5 (14)	5 (14)
≥65	5 (14)	8 (22)

Time between questionnaire responses (days)
Mean [range]	44 [6–115]
Median	37

Marital status^*
Married	26 (72) 5 (14) 1 (3) 2 (6) 2 (6)
Co-habitant
Engaged
Not married
Living apart

Length of relationship (years)^*
Mean [range]	21.2 [1–52]
<5	5 (14) 6 (17) 5 (14) 20 (56)
5–9
10–19
≥20

^*Information provided by the partners.

Table 3 Mean, standard deviation (SD), and 95% confidence intervals for body image (BIS), satisfaction with breast reconstruction (EORTC QLQ-BRR26), sexuality (SAQ), anxiety/depressive symptoms (HAD), and health-related quality of life (SF-36)

EORTC QLQ-BRR26: higher scores indicate higher satisfaction for “Cosmetic outcome of the breast” and “Satisfaction with reconstructed nipple”, and inversely for the rest of the measures [range 0–100].

BIS: higher scores indicate more problems [range 0–30].

SAQ: higher scores indicate more pleasure [range 0–18]; higher scores indicate more discomfort [range 0–6]; a habit of <0.33 = less frequent than usual [range 0–3].

HAD: for either anxiety or depressive symptoms: within normal levels of problems if <8, possible clinical cases if 8–10, and clinical cases if ≥11 [range 0–21].

SF-36 [range 0–100, higher scores indicate better HRQoL]: “Physical health” involves “Physical functioning”, “Physical role”, and “Bodily pain”; the overall representation of both physical and psychic/mental health involves “General health” and “Vitality”, where both scales are bipolar, a median of “General Health” means no negative values of health in general, a median of “Vitality” implies absence of fatigue; “Psychic/mental health” involves “Mental health”, “Emotional role”, and “Social functioning”, where “Mental Health” is a bipolar scale, mid-value implies absence of anxious/depressive symptoms or psychosocial impairment, and 100 indicates best possible well-being.

^S Small and ^M moderate clinical significant differences [34]

^* p=0.0362

^† p=0.0419

^‡ p=0.0392

No competing interests reported.

Women’s satisfaction and body image long-term after risk-reducing mastectomy – the partners’ perspective

Status:

Version 1

Abstract

Purpose

Methods

Results

Conclusion

Figures

Introduction

Material And Methods

Participants and procedure

Instructions and instruments

Statistical analysis

Results

Satisfaction with the results of the breast reconstruction (EORTC QLQ-BRR26)

Body image (BIS)

Sexuality (SAQ)

Anxiety and depression (HAD)

Health-related quality of life (SF-36)

Discussion

Conclusions

Declarations

References

Tables

Additional Declarations

Status:

Version 1