Abstract
BackgroundYoung breast cancer survivors are often dissatisfied with the information provided on fertility and sexuality. Our aim was to discuss possible contributing factors and to propose strategies to increase patient satisfaction with such information.MethodsUsing the French National Health Insurance System database, we constituted the ELIPPSE40 regional cohort of 623 women, aged 18–40, diagnosed with breast cancer between 2005 and 2011. As of January 2014, 319 women had taken part in the 10-, 16-, 28 and 48-month telephone interviews. Satisfaction with the information provided about the potential impact of cancer and its treatment on fertility and sexuality was assessed at 48 months after diagnosis on 5-point Likert scales.ResultsFour years after diagnosis, only 53.0 and 42.6 % of women were satisfied with fertility- and sexuality-related information, respectively, without any significant change over the 2009–2014 period (P = 0.585 and P = 0.676 respectively). The two issues were moderately correlated (ρ = 0.60; P <0.001). General satisfaction with medical follow-up was the only common correlate. Irrespective of sociodemographic and medical characteristics, satisfaction with fertility-related information was greater among women with a family history of breast/ovarian cancer who had the opportunity to ask questions at the time of cancer disclosure. Satisfaction with sexuality-related information increased with the spontaneous provision of information by physicians at cancer disclosure.ConclusionsPromoting both patients’ question asking behavior and more systematic information could improve communication between caregivers and young breast cancer survivors and address distinct unmet needs regarding fertility- and sexuality- related information.Electronic supplementary materialThe online version of this article (doi:10.1186/s12885-015-1542-0) contains supplementary material, which is available to authorized users.
Highlights
Young breast cancer survivors are often dissatisfied with the information provided on fertility and sexuality
In the context of the national effort to improve the quality and quantity of information provided after cancer diagnosis, the aims of the present study were to measure satisfaction with information provided on the topics of fertility and sexuality among young women with Breast Cancer (BC), to highlight factors contributing to this satisfaction and to propose possible strategies to increase it
Description of the study population From 2005 to 2011, of the 1043 women with BC under 40 identified in the NHIF database, 906 were eligible to participate in the ELIPPSE40 cohort (Fig. 1)
Summary
Young breast cancer survivors are often dissatisfied with the information provided on fertility and sexuality. Rates of amenorrhea can reach 80 % in women under 40 years of age with poor prognosis. After 4–6 cycles of cyclophosphamide containing polychemotherapy, the ovaries of these young women age by approximately 10 years [10]. The duration of initial adjuvant hormone treatment (recommended for 5 years) prevents women from considering pregnancy, as fertility is likely to be reduced due to age-related decline. Even though young women constitute a minority of BC patients (each year in France, approximately 10 % of newly-diagnosed women are under 40, [11]), they have specific concerns and issues, including queries regarding fertility
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