Self-reported sexual health: Breast cancer survivors compared to women from the general population – an observational study

A decrease in breast cancer (BC) mortality and improved screening and treatment options has lead to a steadily increasing group of breast cancer survivors (BCS), which in turn create new demands in survivorship health care [1‐5]. Quality of life (QoL) issues are of high relevance in the after-care of BC patients [6, 7]. Breast cancer and its associated treatments are often linked to a number of physical and psychosocial changes and uncertainties that may have a deleterious impact on partnership and sexuality. Though several studies indicate that a majority of BCS show overall QoL scores comparable to those of the general population [8], adverse effects from cancer treatment can continue to impact upon sexual health (SH) for years [9‐11]. With a prevalence of 23–85%, sexual morbidity is amongst the most frequent side effects and consequences of a BC diagnosis and associated treatments [12]. Sexual morbidity encompasses a wide range of problems and symptoms including lack of sexual desire and interest, body satisfaction, frequency of intercourse, sexual satisfaction, arousal, orgasm, and pain associated with intercourse [13]. Levels of these sexual problems seem to exceed those of women with no previous or current BC (WNBC) in the same age range [6, 8]. Moreover, adverse sexual effects have been illustrated to be associated with worse cancer-related distress, depression, symptom severity and overall QoL [14‐16].

Despite an increasing research interest in the relative contribution of a BC diagnosis to sexual problems in the long-term, research on the persistence of the well known disease- and treatment-related sexual adverse effects into survivorship has received relatively little attention. We currently lack data on this subject systematically assessed in a routine clinical setting as data derived from clinical trials does not usually include this topic. Patients’ subjective perspectives, assessed routinely provide complementary information contributing to a better understanding of disease- and treatment-related dysfunction particularly within sensitive domains such as sexuality. Validated patient-reported outcome (PRO) measures provide an efficient option for a more comprehensive assessment of SH impairments. Moreover, gathering patient reported information on sexual problems in BCS can help to improve the detection rates of sexual adverse effects and therefore make them amenable to individualized clinical care efforts in daily clinical practice [17]. This might result in a reduction of sexual problems and subsequently an improvement of overall QoL in BCS.

We investigated the self-reported SH outcome of BCS in routine after-care in comparison to WNBC. Additionally, predictors of SH were investigated. In detail, we addressed the following research questions: (1) Does self-reported SH of BCS differ from those of WNBC? (2) Is the SH of BCS predicted by treatment-related and clinical variables? (3) Which self-reported femininity issues, psychosocial issues and sociodemographic variables predict follow-up SH?

Cancer survivorship issues have become increasingly important in post-treatment care during the past decade. SH and femininity have been identified among the most crucial subjects for women surviving cancer. In this study, we aimed to elaborate and understand more of the relative contribution of a BC diagnosis and its treatment to female SH over time. For this purpose, the consideration of subjective patient data is inevitable. We investigated self-reported levels and predictors of SH outcome in BCS in the clinical routine in comparison to WNBC.

Even years after treatment, BC patients still reported distinct levels of sexual health impairments that differed significantly from that of women without a history of BC. BCS were not only more frequently sexually inactive, but also met the criteria for a HSDD more often. Almost 70% of BCS qualified for a HSDD based on self-reports which is comparable to results from a recent study from Raggio and colleagues [25] who found rates of even 77% in BCS using the FSFI as outcome measure. Similar findings were reported by Panjari and colleagues [10] who observed sexual functioning problems in 70% of BC patients up to 12 months post-diagnosis.

Overall, BCS reported worse SH than WNBC (according to the SIDI-F). This result complements previous findings of higher sexual dysfunction observed in BC patients short after treatment [17, 26‐28]. Our results confirm some previous evidence. Already15 years ago, Dorval and colleagues [29] reported that BCS did not differ from population controls in all QoL domains except sexuality, which was worse in BC patients. However, despite the invention of new treatment regimes and treatment efforts SH impairments still seem to be a major problem related to BC. Only recently, Boquiren and colleagues [30] illustrated that BCS experienced poorer sexual functioning than the female general population. Corresponding results have been obtained by Bredart and colleagues [31]. Particularly, the issue of discomfort with intercourse seems to be a major factor contributing to this difference. Quite surprisingly, pleasure and habit was not significantly different based on results derived from the SAQ in this study. However, this finding can partly be explained by the questionnaire construction. Patients who are sexually inactive do not complete the questions on pleasure and habit so that inactive patients are not included for the analysis of these scales. Considering sexual inactivity as highly sexually dysfunctioning, we can assume that these results tend to underscore the real level of dysfunction in the BCS group. In view of the SIDI-F pleasure items, herein completed also by inactive women, we found impairments also for pleasure and habit.

The previously reported higher deteriorating effect of chemotherapy and mastectomy [32‐35] on SH compared to breast conserving surgery and other adjuvant treatments in or short after the treatment phase seems to be no longer prevalent in the follow-up period. We did not observe an association of any treatment-related variables with SH in BCS. Though corresponding results were observed previously [31], this is in contrast to other established findings. For instance, Raggio and colleagues [25] found mastectomy to have late effects on SH in a smaller sample of BCS up to 7 years post-treatment. Evidence, hence, is somehow inconsistent and needs further elaboration. Larger patient samples would allow the comparison of different chemotherapeutic agents and/or combination treatments regarding their influence on SH which might give further insight into this subject. However, the extent of disease proliferation – indicated by the grade of disease herein – seems to play a role for follow-up SH outcome.

Depressive symptoms, age, and partnership satisfaction seem to be crucial factors for follow-up SH outcome. Low partnership satisfaction and quality are well known to be among the strong factors deteriorating BCS’ SH [31, 36, 37]. This is true also for SH in women without a history of BC [38, 39]. Higher psychological distress and higher age have previously been observed to be associated with reduced SH [26, 40, 41]. Our study findings, thus, confirm established evidence. The role of body image regarding SH outcome seems to be somewhat contradictory. We could not find body image to – though associated – be central to SH problems BCS develop; so did others [42]. However, on the contrary, substantial evidence suggests body image to be among the most important issues for SH after BC [3, 10, 31]. This heterogeneity might be explained by different study groups, study designs, and sample sizes. There are hardly any studies that evaluated the association of body image and sexuality by use of a longitudinal study design with a homogeneously defined baseline and covering a substantial follow-up period. The latter design might contribute to a more precise picture of this association.

Another interesting finding of this study is the reported rate of 60% of HSDD in WNBC. This observation underscores previous estimates of sexual dysfunction as a crucial female problem in general, ranging from 25% to 63% [43]. A BC diagnosis and treatment seems to aggravate this problem of a pretty high pre-diagnosis impairment “level”.

At this point some study limitations have to be discussed. Firstly, we designed the study cross-sectionally. A longitudinal study design including baseline data might have given additional insight into changes of SH over time. Secondly, the use of the SIDI-F as a self-report version has not been validated previously. However, scale reliability and correlation with the widely used and validated PRO measure SAQ was excellent. Subsequently, we can assume this measure to provide validate results. The anonymous completion of questions offered to the patient was considered to contribute to the reduction of potential response bias immanent to PRO assessments. In addition, the potential for selection bias is immanent to studies with a consecutive, unsystematic inclusion procedure. Thirdly, the definition for survivorship used in this study ecompasses the includion of a broad range of patients at different stages post treatment (0.3–17 years), so that the patient comparability might be questioned in this regard. However, we controlled for this factor including time since diagnosis in the analysis showing no impact of this variable on patients’ SH. In addition, this is an issue immanent to survivorship studies in general.

Our results demonstrate that SH problems persist into BC survivorship and differ significantly from the general population. Sexuality should be regarded as major health care demand in BC survivorship care, as supported also by other authors [44]. A sensibilisation of health care providers towards this subject can be the first step in the improvement of care efforts. Health care providers can break the taboo by addressing SH with the patient as an important survivorship issue in their routine survivorship care/ counselling. The integration of PRO into routine survivorship health care can provide in addition an efficient option to improve the detection of SH problems. Moreover, the routine use of PRO has been observed to facilitate patient-clinician communication and consequently contributes to patient empowerment and patient satisfaction. Awareness and an improved detection of a SH problem can help patients to express their care demands and contribute to targeting treatment efforts. Depending on their SH care demands, patients might be offered some educational information or be referred to a psychologist or gynaecologist specialized on SH for in-depth treatment. Multi-modal treatment options offered by a multi-professional team seem to be most promising for the management of SH problems [44]. However, further reaearch on targeted interventions is required as there are currently hardly any state-of-the-art treatment recommendations for SH for BCS available. Consequently, the treatment of depressive symptoms and partnership problems can contribute to increase not only overall QoL but also BCS’ SH. This is of vital importance with reagard to the sensitive QoL aspect of SH.