title: Women's experiences with information provision and deciding about fertility preservation in the Netherlands: 'satisfaction in general, but unmet needs'.
abstract: OBJECTIVE
  It is not well-known how women receiving counselling consultation about fertility preservation (FP) in the Netherlands perceive the information provision about and referral for FP in the oncology setting. The aim of this study was to qualitatively explore women's experiences with the (process of) information provision about the gonadotoxic effects of cancer treatment and about FP and the decision-making process and to obtain their recommendation for improvements.
  
  
  METHODS
  Semi-structured interviews with female patients with cancer who had received a counselling consultation on FP (at 18-40 years of age).
  
  
  RESULTS
  Thirty-four interviews were held (response rate 64%). Information provision was considered to be important. Overall, women were satisfied with the timing and the content of the information, but women were less positive about the need to be assertive to get information, and the multiplicity of decisions and actions to be carried out in a very short time frame.
  
  
  CONCLUSIONS
  Information provision on gonadotoxic effects of cancer treatment and about FP was overall deemed sufficient, timely and important. Women recommended standardization of the information provision, improvement of communication among clinicians and medical centres, and availability of FP-specific patient information materials to improve future information provision processes.
authors: Department of Gynecology, Leiden University Medical Center, Leiden, The Netherlands.
authors: Mirjam M
authors: MM
authors: Garvelink
authors: Department of Gynecology, Leiden University Medical Center, Leiden, The Netherlands.
authors: Moniek M
authors: MM
authors: ter Kuile
authors: Department of Gynecology, Leiden University Medical Center, Leiden, The Netherlands.
authors: Rinske M
authors: RM
authors: Bakker
authors: Department of Gynecology, Leiden University Medical Center, Leiden, The Netherlands.
authors: Willemijn J
authors: WJ
authors: Geense
authors: Department of Gynecology, Leiden University Medical Center, Leiden, The Netherlands.
authors: Esther
authors: E
authors: Jenninga
authors: Department of Gynecology, Leiden University Medical Center, Leiden, The Netherlands.
authors: Leoni A
authors: LA
authors: Louwé
authors: Department of Gynecology, Reinier de Graaf Groep Delft, Delft, The Netherlands.
authors: Carina G J M
authors: CG
authors: Hilders
authors: Department of Medical Decision Making, Leiden University Medical Center, Leiden, The Netherlands.
authors: Anne M
authors: AM
authors: Stiggelbout
mesh_terms: D000293:Adolescent; D000328:Adult; D000970:Antineoplastic Agents / Q000009:adverse effects; D003657:Decision Making; D005260:Female; D059247:Fertility Preservation / Q000523:psychology*; D006801:Humans; D033181:Information Dissemination; D007407:Interviews as Topic; D008495:Medical Oncology; D009369:Neoplasms / Q000188:drug therapy*; D009426:Netherlands; D017060:Patient Satisfaction; D012017:Referral and Consultation; D012189:Retrospective Studies; D055815:Young Adult
chemical_list: D000970:Antineoplastic Agents
keywords: cancer; decision making; fertility preservation; information provision; oncology; psychosocial
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