Satisfaction with fertility- and sexuality-related information in young women with breast cancer—ELIPPSE40 cohort

In this population of young BC survivors, only 53.0 and 42.6 % reported being satisfied
with information provided about fertility and sexuality, respectively, 4 years after
diagnosis. Despite a trend towards a general increase in and satisfaction with the
information provided at cancer disclosure, these two long-term issues, particularly
sexuality, remain insufficiently addressed. To our knowledge, this is the first prospective
cohort study to simultaneously evaluate patient perception of information provided
at cancer disclosure and the subsequent patient satisfaction with information about
sexuality and fertility issues. It highlights that both these issues are different:
they are moderately correlated but have distinct correlates and contributing factors.
Indeed, general satisfaction with medical follow-up was the only common factor observed
(Table 2). As one might expect this factor to be strongly associated with more specific aspects
of satisfaction, it was systematically adjusted for in all analyses of more specific
satisfaction variables.

In this study, the percentage of women who reported having had satisfactory discussions
on fertility issues with their healthcare providers is quite similar to the 51.0 %
of patients who felt their fertility concerns were addressed adequately in Partridge
et al. 52] in the USA. However, the rate of satisfaction with information provided about effects
of cancer treatments on sexuality in our study is below the 52.4 % reported by Ussher
et al. 30] in their study on sexual well-being in Australian BC survivors of all ages surveyed
on average 3.9 years after diagnosis. One reason may be the lack of specific guidelines
concerning discussion about sexuality for cancer patients at the time of the study
in France. Our result confirms the important need to provide detailed and comprehensive
information on sexuality.

Differences regarding predictors associated with FRI and SRI satisfaction were also
observed, particularly concerning patient proactivity when obtaining information about
these two distinct issues. For example, a history of breast or ovarian cancer among
family members of patients and patients’ active involvement in asking questions at
cancer disclosure were beneficial to obtaining information on fertility issues. Several
physician barriers to initiating discussions about fertility have been previously
described 53], 54] and may explain why patients are more active and informed by family to obtain satisfactory
information. Indeed, physician discussion with their patients (and families) may well
be hindered by a lack of knowledge, resources and communication skills (lack of adequate
vocabulary), or system barriers (the optimal time to raise these issues 24] may interfere or compete with several other issues related to the diagnosis, treatment,
and prognosis that must be discussed in the already lengthy initial oncology visit).
Instead SRI satisfaction was associated more with the amount of information provided
spontaneously (i.e. not in response to a patient question) by the physicians at cancer
disclosure, suggesting a more passive involvement of patients regarding sexuality.

Young BC survivors do not obtain adequate FRI and SRI because the healthcare providers
involved tend to underestimate the importance of this information 7], 30]. In Ussher et al. 30] one patient reported: “It took 4 or 5 times of broaching the subject with my doctors to finally get a referral
to someone who could give me some advice on how to deal with the vaginal dryness”. Thewes et al. 29] observed that physicians were slow to realize that fertility-related information
really is an important issue. Indeed, it has been shown that doctors are not particularly
good at eliciting symptoms related to treatment morbidity 55]. Clinicians need to be more aware of symptoms related to treatment morbidity and
need to be more receptive to their patients’ need for information.

As shown in previous research, patients who feel they are poorly informed are not
only dissatisfied with their care 7], 29], 30], 56], but may also experience a deterioration in psychosocial wellbeing 7], 23], 27], 28], 31], 34], 35]. The present study showed that better score of women’s perception on their body image
was associated with greater satisfaction with both FRI and SRI, although a simple
correlation between two variables measured at the same time cannot prove the existence
of a causal relationship. Satisfaction with FRI was also negatively associated with
depressive symptoms. Previous studies 31], 34], 35] showed the significant association between satisfaction with BC information and patients’
health-related physical and mental quality of life. In their study including patients
and partners across a range of sexual and non-sexual cancers, Perz et al. 23] also showed that dyadic sexual communication was a significant predictor of sexual
functioning among women of all ages. Thus, being provided with such information can
alleviate the anxiety around post-cancer intimate changes, minimize the negative impact
on intimate relationships and enhance health-related quality of life 56]. Furthermore, in the present study, only the satisfaction with FRI was correlated
with women’s overall perception of their health. For young women with BC, infertility
may perhaps be discussed more with healthcare providers but may also be more important
for patients compared with sexual dysfunction.

In our study, no socio-demographic characteristic, including age and previous children,
was associated with FRI satisfaction, although infertility concerns may be higher
among young women with fewer children 52]. However, for sexuality, young women with a level of education higher than high school
were less likely to be satisfied with SRI than those with a lower education level.
Furthermore, women who had a sexual partner were, unsurprisingly, more upset about
intimate issues, since single women who are not sexually active may not be as aware
of the problems associated with intimacy and the disease 25]. This factor did not reach statistical significance.

Contrary to previous results 45], 57], the association between hormone treatment and FRI satisfaction did not reach statistical
significance. Moreover, our multivariate analysis showed a non-significant difference
between women who had received FEC100 chemotherapy regimen and the others, in terms
of FRI satisfaction, despite the known side effects of this regimen on ovarian function
10].

Some of the factors reducing the probability of being satisfied with information provided
among these women may well be beyond the scope of medical treatment, to the extent
that they are related to psychosocial vulnerability 5]. Indeed, our analyses highlight that feelings of anxiety were associated with poor
FRI satisfaction. Anxious preoccupation in a young woman coping with BC may stem from
not knowing if she will still be able to have a child. Four years after diagnosis,
most of the women in our study were over 40 years of age, and had received aggressive
BC treatment, increasing the risk of fertility loss due to premature ovarian aging
10]. Having a history of attention and/or memory problems was also associated with poor
SRI satisfaction, showing the inability of woman with cognitive impairment to retain
information about sexual health, particularly information passively obtained (i.e.
information provided spontaneously by the doctor, not as a result of patient questions)
40].

Some limitations of our study have to be acknowledged. No open-ended questions about
FRI/SRI were included on the one hand, and health literacy has not been assessed,
on the other. Hence issues regarding the kinds, nature, quality, content and impact
of the information (that patients have accessed or understood) have not been addressed
56]. Participants in this study might also not recall all the information previously
given (at diagnosis for example). Thus, their responses may have been influenced by
recall bias. Furthermore, satisfaction with FRI and SRI was assessed at a single time
point (M48). Only patients with irregular or absent menstrual periods after BC had
been interrogated at M16 about provision of FRI before the start of treatment. Among
the 179 women affected, those who reported they had received this information at M16
were more likely (P?=?0.002) to be satisfied with FRI at M48 (60.1 %) than the others (40.3 %). This
may offer some additional validity to the M48 assessment of satisfaction with FRI.
A further limitation was that as data about satisfaction was collected through telephone
interviews, the possibility of social desirability bias cannot be excluded. Moreover
no FRI or SRI satisfaction measure was available for patients lost to follow-up 4 years
after diagnosis. However, the effect of such limitations might have been to overestimate
rather than underestimate satisfaction, if we hypothesize that social desirability
might increase reported satisfaction with care and dropouts might be more severe patients
with higher risk of side effects and dissatisfaction. The rather low rate of satisfied
women in our study is consistent with previous findings. The main strengths of the
study are its prospective design, a satisfactory response rate, and a regionally representative
sample of young French women with BC. Because of regional recruitment, it was not
possible to document what kinds of information were routinely provided to these women,
but it seems that the general increase in the provision of BC information over the
2005–2009 study period was still not enough to meet the information needs of young
BC survivors regarding the issues of fertility and sexuality.