Professionals' barriers in female oncofertility care and strategies for improvement.

STUDY QUESTION: What are healthcare professionals' barriers and strategies for improvement in female oncofertility care? SUMMARY ANSWER: Professionals perceived barriers in knowledge, attitude and organization of oncofertility care and suggested strategies to improve oncofertility care. WHAT IS KNOWN ALREADY: The potential loss of fertility is one of the most important undesirable side effects of cancer treatment in women of reproductive age. Unfortunately, despite guideline recommendations, not all patients are informed about their fertility risks and referred for fertility preservation (FP) counselling. Insight into barriers for discussing FP and appropriate referral is necessary before improvements can be made. STUDY DESIGN, SIZE, DURATION: The aim of this was study was to identify barriers and gather improvement suggestions through semi-structured in-depth interviews conducted with 24 professionals working in oncofertility care. Subsequently, an expert panel meeting was held to reach consensus on a set of improvement strategies. PARTICIPANTS/MATERIALS, SETTING, METHODS: Oncological professionals were recruited from the three Dutch expertise hospitals for female FP and their affiliated hospitals. The expert panel consisted of six healthcare professionals, five survivors and two researchers. In the Dutch setting, financial aspects do not play a role in oncofertility care. MAIN RESULTS AND THE ROLE OF CHANCE: Barriers were identified and categorized into the patient level (e.g. focus on surviving cancer), the professional level (e.g. lack of awareness, knowledge, time, and attitude), or the organizational level (e.g. unavailable written information, disagreement on who is responsible for discussing infertility risks). The expert panel reached consensus on essential elements for a multifaceted improvement programme: development of information materials (leaflets, online decision aid), education of professionals, a role for specialized oncology nurses in informing patients and patient navigators at the fertility department to facilitate referral and counselling, medical record reminders, standard consultations with a gynaecologist and agreement on responsibility. LIMITATIONS, REASONS FOR CAUTION: Selection bias could have occurred because it is likely that only professionals with interest in oncofertility care participated. However, this would mean that the barriers were underestimated. WIDER IMPLICATIONS OF THE FINDINGS: This study forms the basis for the development of a multifaceted oncofertility programme, which is essential to increase adherence to the national clinical guideline. STUDY FUNDING/COMPETING INTEREST(S): This work was supported by the Radboud university medical center. The authors have declared no competing interests. Prof. Dr Braat reports unrestricted grants from Ferring BV, Serono and Goodlife, outside the submitted work. TRIAL REGISTRATION NUMBER: N/A.

Decision-making in female fertility preservation is balancing the expected burden of fertility preservation treatment and the wish to conceive.

STUDY QUESTION: What are the decisive factors in fertility preservation (FP) decision-making in young women scheduled for gonadotoxic therapy? SUMMARY ANSWER: 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. WHAT IS KNOWN ALREADY: 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. STUDY DESIGN, SIZE, DURATION: 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. PARTICIPANTS/MATERIALS, SETTING, 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. MAIN RESULTS AND THE ROLE OF CHANCE: 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. LIMITATIONS, REASONS FOR CAUTION: 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. WIDER IMPLICATIONS OF THE FINDINGS: 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. STUDY FUNDING/COMPETING INTERESTS: 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.

[National guideline 'Cryopreservation of ovarian tissue']. / Richtlijn 'Cryopreservatie van ovariumweefsel'.

The treatment of children and young adults with cancer increasingly results in cure, but for a number of female patients this is at the expense of infertility. For women and girls with cancer and the wish to have children in the future, cryopreservation of ovarian tissue may be a solution in the absence of alternatives for the conservation of fertility. Because of the uncertain effectiveness and safety of cryopreservation of ovarian tissue, the Dutch national guideline 'Cryopreservation of ovarian tissue' advises removing and freezing ovarian tissue only if this is done within the framework of scientific research. Reimbursement of this procedure and financing of the relevant and necessary research have not yet been arranged.