Cancer patients' and professional caregivers' needs, preferences and factors associated with receiving and providing fertility-related information: a mixed-methods systematic review

Objectives: Cancer treatment can impair fertility. The aim of this review was to investigate (1) fertility information needs, receipt and provision, (2) fertility information preferences, and (3) factors associated with receiving/providing fertility information. Cancer patients' and professional caregivers' perspectives were considered.

Design: Mixed-methods systematic review.

Data sources: Six electronic databases (PubMed, Web of Science, CINAHL, CRD, Embase) were systematically screened to retrieve articles published between January 2001 and March 2012. Reference lists and conference abstracts were checked for additional publications.

Review methods: The principles outlined in the Cochrane Handbook for Systematic Reviews of Intervention were applied. Publications were included if they explored fertility-related information/communication in cancer patients/survivors of reproductive age or professional caregivers. The Critical Appraisal Skills Programme for Qualitative Studies and the Quality Assessment Tool for Quantitative Studies were used to assess the methodological quality. A standardised form based on the Cochrane guidelines for systematic reviews was used to extract the data. Two independent reviewers performed all methodological steps.

Results: Of the 1872 papers found, 27 were included in this review. The majority (66-100%) of the cancer patients wanted information about the impact of cancer therapy on fertility. The need and importance were higher in younger and childless patients, and in patients having childbearing plans. The number of patients receiving this information ranged from 0% to 85%. Several factors were associated with the lack of information receipt, including female gender and age 35 years or older. Patients preferred information via an individual consultation. In the diagnostic phase patients needed information about the impact of the treatment on fertility and preservation options. At the end or after the treatment, information needs shifted towards long term effects. Professional caregivers experienced several barriers in providing fertility information, including caregiver-, patient- and institutional-related factors. Nurses in particular, perceived difficulty in providing fertility-related information due to additional barriers associated with limited responsibility and opportunity in fertility information provision.

Conclusion: Professional caregivers experienced multiple barriers that hinder information provision. Further exploration of the role of Advanced Nurse Practitioners/Midwifes and the development of an evidence based intervention to overcome caregiver-related barriers are recommended to improve information provision.