title: Satisfaction with fertility- and sexuality-related information in young women with breast cancer--ELIPPSE40 cohort.
abstract: BACKGROUND
  Young 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.
  
  
  METHODS
  Using 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.
  
  
  RESULTS
  Four 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.
  
  
  CONCLUSIONS
  Promoting 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.
authors.affiliation: UMR912 "Economics and Social Sciences Applied to Health & Analysis of Medical Information" (SESSTIM), 13006,, Marseille, France. ali.ben-charif@inserm.fr.|UMR_S912, IRD, Aix Marseille Université, Marseille, France. ali.ben-charif@inserm.fr.|ORS PACA, Southeastern Health Regional Observatory, Marseille, France. ali.ben-charif@inserm.fr.
authors.forename: Ali
authors.initials: A
authors.lastname: Ben Charif
authors.affiliation: UMR912 "Economics and Social Sciences Applied to Health & Analysis of Medical Information" (SESSTIM), 13006,, Marseille, France. anne-deborah.bouhnik@inserm.fr.|UMR_S912, IRD, Aix Marseille Université, Marseille, France. anne-deborah.bouhnik@inserm.fr.
authors.forename: Anne-Déborah
authors.initials: AD
authors.lastname: Bouhnik
authors.affiliation: UMR912 "Economics and Social Sciences Applied to Health & Analysis of Medical Information" (SESSTIM), 13006,, Marseille, France. dominique.rey@inserm.fr.|UMR_S912, IRD, Aix Marseille Université, Marseille, France. dominique.rey@inserm.fr.|ORS PACA, Southeastern Health Regional Observatory, Marseille, France. dominique.rey@inserm.fr.
authors.forename: Dominique
authors.initials: D
authors.lastname: Rey
authors.affiliation: UMR912 "Economics and Social Sciences Applied to Health & Analysis of Medical Information" (SESSTIM), 13006,, Marseille, France. PROVANSALM@ipc.unicancer.fr.|Institut Paoli-Calmettes, Marseille, France. PROVANSALM@ipc.unicancer.fr.
authors.forename: Magali
authors.initials: M
authors.lastname: Provansal
authors.affiliation: IMBE UMR7263, Aix Marseille Université, CNRS, IRD, Avignon Université, Marseille, France. Blandine.COURBIERE@ap-hm.fr.|Department of Obstetrics, Gynecology and Reproductive Medicine, APHM, La Conception Hospital, Marseille, France. Blandine.COURBIERE@ap-hm.fr.
authors.forename: Blandine
authors.initials: B
authors.lastname: Courbiere
authors.affiliation: UMR912 "Economics and Social Sciences Applied to Health & Analysis of Medical Information" (SESSTIM), 13006,, Marseille, France. bruno.spire@inserm.fr.|UMR_S912, IRD, Aix Marseille Université, Marseille, France. bruno.spire@inserm.fr.|ORS PACA, Southeastern Health Regional Observatory, Marseille, France. bruno.spire@inserm.fr.
authors.forename: Bruno
authors.initials: B
authors.lastname: Spire
authors.affiliation: UMR912 "Economics and Social Sciences Applied to Health & Analysis of Medical Information" (SESSTIM), 13006,, Marseille, France. julien.mancini@univ-amu.fr.|UMR_S912, IRD, Aix Marseille Université, Marseille, France. julien.mancini@univ-amu.fr.|BiosTIC, La Timone Hospital, APHM, Marseille, France. julien.mancini@univ-amu.fr.|UMR912, SESSTIM, "Cancers, Biomedicine & Society" group, Institut Paoli-Calmettes, 232 Bd Ste Marguerite, 13273, Marseille, France. julien.mancini@univ-amu.fr.
authors.forename: Julien
authors.initials: J
authors.lastname: Mancini
mesh_terms: D000328:Adult; D001943:Breast Neoplasms / Q000523:psychology* / Q000628:therapy; D005260:Female; D005298:Fertility; D005602:France; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D007407:Interviews as Topic; D017060:Patient Satisfaction / Q000706:statistics & numerical data*; D011446:Prospective Studies; D019529:Sexuality / Q000523:psychology*; D055815:Young Adult