This study sought to determine potential predictors of fertility-related distress among young gynaecological and breast cancer patients, focusing specifically on the role of one’s socio-cultural background and using the CSM as a theoretical framework to guide the analysis and interpretation of the results.
Findings suggest that Polish participants; those recruited through clinics as opposed to online; those with higher desire to have children; those with higher negative affect; those who reported regret with respect to the treatment outcome; and finally those who perceived their illness as more threatening were more likely to experience higher levels of fertility-related distress. An in-depth analysis of illness perceptions also indicates that it was the emotional representation (reflected through more concern with regard to illness and more emotional consequences of the disease), as opposed to the cognitive representation that mainly contributed to higher levels of fertility-related distress. Furthermore, exploratory analyses propose that while desire to have children affects fertility-related distress directly, it can also have an indirect effect through influencing treatment-related regret, psychological VOC, consequences, and emotional representation. Finally, the model investigating the indirect effect of desire to have children through treatment-related regret seems to suggest that this relationship can be affected by one’s socio-cultural background.
This study corroborates the evidence that the wish to have a child or more children is a likely predictor of post-treatment distress related to fertility among young women with cancer. However, it does not support the evidence suggesting that not having children or being single may contribute to higher distress. This is potentially important for clinical practice in that a patient’s preferences regarding family life, rather than objective indicators such as relationship or childbearing status, seem to determine the patient’s emotional responses post-treatment. These findings emphasise the role of patient-physician communication if preventative measures such as fertility preservation are desired prior to cancer treatments.
The fact that distress was not predicted by objective characteristics of the disease (such as type of diagnosis, stage, or type of treatment) is consistent with evidence from the literature [16] and supports the core premise of the CSM [24,25,26] that subjective conceptualisation of disease determines one’s response to illness.
The subjective conceptualisation of illness in this study was measured through participants’ illness perceptions. The research focusing on infertility in otherwise healthy women indicates that distress related to the condition is predicted by the perception of more severe consequences of infertility and less control over the condition [43,44,45]. The findings of this study, however, indicate that although the indicators of cognitive representation (i.e., consequences and identity) contributed to the distress, it was in fact the emotional representation of the illness that best predicted the levels of distress. In other words, the more concerned women were about their illness and the more emotionally burdened they were by cancer diagnosis, the more fertility related-distress they experienced.
Not only the emotional representation of the illness itself, but also what women brought to the situation from the outset, namely their affective predisposition determined the level of post-treatment fertility-related distress. Women who described themselves as generally experiencing more negative emotions also reported higher levels of fertility-related distress. Some research indicates that people who express higher levels of negative affect generally score higher on self-report measures of distress [46]. For this reason, in this study the negative affectivity was used as a control variable. Although it remained significant in the final model predicting distress, so did the emotional representation of illness suggesting that the disease-specific response predicted fertility-related distress above the general negative affectivity understood as one’s predisposition.
Another factor which predicted fertility-related distress was the regret related to the outcome of treatments – the so called ‘outcome regret’ [47]. Women who regretted the fact that cancer treatments impacted their fertility were more likely to experience fertility-related distress than those who did not experience regret. Studies which investigated the concept of fertility-related regret among young women diagnosed with cancer mainly concentrated on the other side of the issue, namely the extent to which women experience regret with respect to the decisions about fertility preservation [16]. The existing evidence suggests that counselling about fertility [48] and provision of decisional aids [49] can minimise regret with respect to decisions about fertility preservation. It does not, however, answer the question about the extent to which regret can impact fertility-related distress. To our knowledge, this study is the first to demonstrate the relationship between treatment-related regret and the increased risk of fertility-related distress post-cancer.
The particular focus of this study was to investigate the role of culture in determining distress related to fertility after cancer. Although the variables reflecting potential cultural differences in the importance attached to fertility (e.g., cultural disapproval of not having children, psychological, social, and utilitarian VOC) did not predict fertility-related distress, the country of origin did: Polish participants experienced more fertility-related distress. This finding can potentially be explained by the differences between Polish and British cultures which were not covered by the culture specific questions included but which nonetheless exist. Polish culture is very family-orientated and attached to traditional values often dictated by the Catholic Church which stresses the importance of having children and condemns contraception and abortion [50]. The prevalence of such beliefs in society might make the situation in which a woman is unable to have children more stressful. As suggested previously by Seknus et al. [22], women from Eastern Europe are generally less likely to accept the risk of infertility related to chemotherapy compared to their counterparts from Western Europe. However, the reasons for that require further research.
While the desire to have children has been widely reported to be a predictor of fertility-related distress, the mechanisms behind this relationship remain unknown. Although additional investigations conducted for the purpose of this study should be treated with caution due to their exploratory nature, they shed some light on this association.
Separate mediation analyses suggest that desire to have children could affect fertility-related distress through its impact on four other variables – the treatment-related regret, psychological VOC, perceived consequences, and emotional burden of the disease. In other words, experiencing a stronger desire to have children before cancer diagnosis was not only directly related to higher levels of fertility-related distress post-cancer but also resulted in higher regret with respect to the treatment outcome, more perceived consequences, and more emotional burden, and through these relationships indirectly affected distress levels. A stronger wish to have children also seemed to determine the degree of importance attached to the psychological rewards related to having children and via this mechanism influenced distress levels.
In a subsequent multiple mediation analysis, all four mediators remained statistically significant. The paths leading through the consequences as well as emotional representation of illness appear to be in line with the CSM, which suggests that factors inherent to self (e.g., desire to have children) can affect illness perception, and these in turn influence the response to illness. This draws attention to the fact that illness perceptions can be influenced not only by the characteristics of the particular disease one suffers from, but also by factors seemingly unrelated to one’s health. The particular contribution of this preliminary finding lies in the fact that while desire to have children is a non-modifiable factor affecting distress, both perceived consequences and emotional representation of illness could potentially be amenable to interventions to tackle fertility-related distress.
The path involving the psychological VOC could potentially be linked to the socio-cultural dimensions of having children with women who desired children more also perceiving their psychological value as more prominent and through this mechanism being affected by higher levels of fertility-related distress.
The socio-cultural influences were explored further through the analysis of the effect that country of origin had on the last significant mediator, namely treatment-related regret and this was done through the means of moderated mediation. The results of this investigation suggest that while for the British participants a higher desire to have children contributed to higher treatment outcome regret and indirectly to more fertility-related distress, this indirect relationship did not exist in the Polish subsample. Among Polish women, the wish to have children, although related to distress, did not have effect on regret. With the lack of cross-cultural research in the field it is difficult to explain this finding, nonetheless, it may be due to the organisational differences between the Polish and British medical systems. While the UK-based National Institute for Health and Care Excellence (NICE) guidelines suggest discussing fertility preservation with all cancer patients [12] and the National Health Service (NHS) has services in place to facilitate fertility preservation for cancer patients, the same is not true for Poland. Therefore, British women who desired children may have regretted not acting upon the possibility of preserving fertility, while at the same time Polish women, not having had that opportunity, did not experience the regret.
More importantly, however, what this finding indicates is that different factors might be playing a role in determining levels of distress across different cultural settings. This stresses the need for cross-cultural research in the field and the importance of physicians’ awareness of cross-cultural differences between their patients.
Strengths and limitations of the study
The two main strengths of this study are its use of a theoretical framework and its cross-cultural design. The use of the CSM at the level of study design has subsequently allowed us to interpret the findings within its context which contributes to a better understanding of the determinants of fertility-related distress in women with gynecological or breast cancer. This project has also been one of the first cross-cultural studies exploring fertility issues related to cancer, and the first one attempting to uncover how the socio-cultural context may affect fertility-related distress in young female cancer patients.
Despite its strengths, this study also has limitations that need to be accounted for while interpreting its results. At the level of recruitment, it is possible that women who chose to participate in this project were more interested in fertility issues surrounding a cancer diagnosis. This self-selected group may therefore differ from the overall population of young women diagnosed with gynaecological or breast cancer, which limits the generalisability of the findings. At the level of study design, this was a cross-sectional study which means that certain information (e. g., desire to have children before cancer diagnosis) were collected retrospectively. While this allowed us to investigate the associations between the measured variables, it limited our ability of this study to determine the relationships of causality.