title: Decision-making in female fertility preservation is balancing the expected burden of fertility preservation treatment and the wish to conceive.
abstract: OBJECTIVE
  What are the decisive factors in fertility preservation (FP) decision-making in young women scheduled for gonadotoxic therapy?
  
  
  CONCLUSIONS
  FP decision-making in young women scheduled for gonadotoxic therapy is mainly based on weighing two issues: the intensity of the wish to conceive a child in the future and the expected burden of undergoing FP treatment.
  
  
  BACKGROUND
  Future fertility is of importance for young cancer patients whose reproductive function is being threatened by oncological therapy. To prevent or reduce severe psychological effects of infertility as well as feelings of regret about their FP decision after cancer treatment, the quality of fertility preservation counselling (FPC) should be improved. To improve care, those issues forming a decisive factor in FP decision-making for patients should be clarified, as these issues deserve extensive discussion during FPC. Until now, decisive factors have not been isolated from the complex interplay of all aspects of FP that women contemplate during FP decision-making.
  
  
  METHODS
  By using a mixed methods methodology, a questionnaire developed after qualitative research involving a selected group of five women who previously received FPC was retrospectively sent to eligible patients (n = 143) who had received FPC (1999 - July 2013) and to whom at least one FP option was offered.
  
  
  METHODS
  Patients had received FPC at a university hospital in the Netherlands, in a setting where financial factors do not play a role in FP. They were aged ≥16 years and were scheduled for gonadotoxic treatment. The relationship between patients' baseline characteristics, their attributed importance to 28 relevant importance items and their FP choices was investigated.
  
  
  RESULTS
  After five interviews, 28 importance items for FP decision-making were identified and included in our questionnaire. Of these 28 importance items, 24 items could be clustered into seven importance themes. A total of 87 patients (61%) responded to our questionnaire. After performing a multivariable logistic regression analysis, proceeding with FP was related to higher attributed importance during FP decision-making to the theme 'Wish to conceive (in the future)' (odds ratio (OR) 10.8, 95% confidence interval (CI) 3.5-34.4) and the item 'Having a stable partner relationship' (OR 2.0, 95% CI 1.0-4.1), while higher attributed importance to the theme 'Expected burden of FP' during FP decision-making (OR 0.08, 95% CI 0.02-0.3) more often resulted in refraining from treatment.
  
  
  CONCLUSIONS
  Besides possible recall and selection bias, the fact that this study was performed in Dutch patients aged ≥16 years counselled in a single centre, where finance was not an additional consideration, possibly limits the generalizability of our results to a broader European population of cancer patients. Furthermore, we are not able to draw conclusions about the causality of the associations observed in our study.
  
  
  CONCLUSIONS
  The wish to conceive and the expected burden of FP treatment should be discussed carefully with patients during FP decision-making, either by the referring healthcare provider or by reproductive medicine specialist. Prospective research is needed to explore the causality of the associations found in this study. Furthermore, in order to deliver high quality patient-centred care, the development of tools to explore patients' wish to conceive (for example in different age categories) and tools to provide clear information about the burden of FP treatments (using the preferred information channels suggested by patients) is needed.
  
  
  BACKGROUND
  This work was supported by the Radboud Institute for Health Sciences (research school affiliated to the Radboud university medical center). The authors have declared no conflicts of interest with respect to this work.
authors.affiliation: Department of Obstetrics and Gynaecology, Radboud university medical center, PO Box 9101, 6500 HB, Nijmegen, The Netherlands.
authors.forename: Ö
authors.initials: Ö
authors.lastname: Baysal
authors.affiliation: Department of Obstetrics and Gynaecology, Radboud university medical center, PO Box 9101, 6500 HB, Nijmegen, The Netherlands.
authors.forename: L
authors.initials: L
authors.lastname: Bastings
authors.affiliation: Department of Obstetrics and Gynaecology, Radboud university medical center, PO Box 9101, 6500 HB, Nijmegen, The Netherlands.
authors.forename: C C M
authors.initials: CC
authors.lastname: Beerendonk
authors.affiliation: Department of Obstetrics and Gynaecology, Radboud university medical center, PO Box 9101, 6500 HB, Nijmegen, The Netherlands.
authors.forename: S A E
authors.initials: SA
authors.lastname: Postma
authors.affiliation: Department for Health Evidence, Section Biostatistics, Radboud university medical center, PO Box 9101, 6500 HB, Nijmegen, The Netherlands.
authors.forename: J
authors.initials: J
authors.lastname: IntHout
authors.affiliation: Department of Medical Psychology, Radboud university medical center, PO Box 9101, 6500 HB, Nijmegen, The Netherlands.
authors.forename: C M
authors.initials: CM
authors.lastname: Verhaak
authors.affiliation: Department of Obstetrics and Gynaecology, Radboud university medical center, PO Box 9101, 6500 HB, Nijmegen, The Netherlands.
authors.forename: D D M
authors.initials: DD
authors.lastname: Braat
authors.affiliation: Department of Obstetrics and Gynaecology, Radboud university medical center, PO Box 9101, 6500 HB, Nijmegen, The Netherlands willianne.nelen@radboudumc.nl.
authors.forename: W L D M
authors.initials: WL
authors.lastname: Nelen
mesh_terms: D000328:Adult; D000970:Antineoplastic Agents / Q000009:adverse effects*; D017281:Cost of Illness; D003657:Decision Making; D005260:Female; D059247:Fertility Preservation / Q000523:psychology*; D006801:Humans; D007247:Infertility, Female / Q000139:chemically induced*; D011594:Psychometrics / Q000295:instrumentation*; D036301:Qualitative Research; D011795:Surveys and Questionnaires; D055815:Young Adult
chemical_list: D000970:Antineoplastic Agents
keywords: cancer; decision-making; female; fertility preservation; gonadotoxic therapy