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Homework for me One-stop solution for students in need of homework help. Order now Get a Quote. Why choose our homework help? Because we know exactly what matters most to you. Leave all papers to us and rest! Free Revisions. If you feel that your paper could use more work, send it for a free revision. Informants emphasised that, for women who freeze eggs or ovarian tissue, the procedure does not only represent hope for future children but also embodies hope of survival. If their doctor has referred them now, then that represents hope to them, and that is very powerful.
You think, well, how can you make a decision in 2 days or 1 day? But they do, and they can, and we would never let anyone make a foolhardy decision. Informants underscored the importance of explaining the process of fertility preservation in a way that enabled patients, women in particular, to be fully aware of what it involves and they expressed concern that some women appear too optimistic that the procedure will guarantee future children.
Counselling women and providing factual information was thus seen as a crucial part of good clinical practice. I mean, as counsellors in the area, it was very important to us to see the people who were involved, and not just the technology, so I think we wanted to explain the technology, too, in easy-to-understand terms.
Counsellor 1. However, respondents did not see the need to extend counselling to men who freeze sperm before being treated for cancer.
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Why would they? Andrologist 2. That was, I think, for a number of reasons, mainly because there was no technology involved. The importance of establishing protocols, systems, and data bases that allow research as well as monitoring and evaluation of clinical practice, outcomes of the procedures, and patient outcomes was emphasised by all informants. They reported from their experience that data collection in the experimental phase of fertility preservation proved inadequate once procedures were incorporated into a clinical service.
You need fields that you can pull data from. Administrator 1. Administrator 2. It was viewed as essential to have comprehensive data collection that allows evidence to accumulate about the types of cancer and cancer treatments for which fertility preservation improves the chance of future conception, and about factors that influence successful use of stored reproductive material.
These data would allow clinics to provide evidence-based, individualised information to patients about the options available to them.
What were the treatment types that they had? How old were they? The need to link clinic fertility preservation data with records in the state-based Births, Deaths and Marriages BDM Registry has become evident, as this provides crucial information about deaths and births after spontaneous pregnancies among people who do not return to use their stored reproductive material.
Informants discussed the value of a national registry for all fertility preservation procedures and were supportive of an initiative to establish such a registry. The value in having a national registry, the value in getting those numbers, is so you can develop protocols and guidelines a lot quicker, is what the aim is of the national database. Informants pointed out that storage of reproductive material can continue for decades and that it is essential to have systems for maintaining contact with patients and avoiding loss to follow-up. One commonly suggested method for ensuring up-to-date contact details was regular distribution of a newsletter to patients, which was seen as fulfilling several purposes.
This is also a way for us to keep up with our patients.
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One of the purposes [of a regular newsletter] was to do an update of where technology was, but it was also to, I suppose, cull out people a little bit. It was also seen as important to have an active system for clinical follow-up to assess fertility and discuss potential need to use the stored material. I think what is important is to follow up with patients, and I think we were pretty slow about that. This investigation makes an original contribution to knowledge in the opportunity it provides to learn from experts in fertility preservation.
The insights shared by the key informants who participated in this study can be used to inform clinical practice and enhance the care and management of patients seeking fertility preservation before treatment for cancer. To enable patients to consider fertility preservation, it is necessary for their treating oncologists to inform them about the potential impact of treatment on fertility, discuss the available options for storing reproductive material for future use, and refer them for consultation with a fertility specialist.
It is known that young women and men who are diagnosed with cancer want to be informed about the consequences of gonadotoxic treatment for future fertility and about fertility preservation options but that this is not routinely offered [ 2 , 27 , 28 , 38 ]. Studies suggest that this may in part be because health care professionals lack knowledge and resources about the available fertility preservation options and feel ill-equipped to discuss this with patients [ 39 ].
It is also possible that personal discomfort decreases the likelihood that doctors will raise fertility preservation with their patients. A study of oncologists in the UK found that lack of knowledge was one of the main barriers to discussing fertility preservation with patients [ 40 ]. Similarly, fewer than half of surveyed oncologists in the US follow the guidelines of the American Society of Clinical Oncology which recommend that all patients of childbearing age should be informed about fertility preservation [ 41 ].
Discussing fertility preservation may be particularly difficult in the context of paediatric and adolescent cancer but there is evidence that adolescents want to participate in decisions about their cancer treatment and that many are concerned about their future fertility [ 42 ]. It is suggested that educating oncologists about fertility preservation options [ 40 , 41 ] as well as providing information materials about fertility preservation to patients at oncology departments and discussion prompts to physicians may improve rates of referral [ 43 ]. These strategies were assessed as effective in increasing the number of oncologists referring people for fertility preservation procedures and improving communication and collaboration between oncologists and fertility specialists.
The importance of collaborative relationships among oncology and reproductive specialists was apparent in a survey of more than oncologists in Japan, where the lack of a collaborative reproductive specialist was identified as a major barrier to discussing fertility preservation with breast cancer patients [ 44 ]. Being informed about the option of fertility preservation and referred to a facility where this can be done is essential to allow people to make informed decisions about whether to proceed. Men interviewed about their experience of sperm banking before cancer treatment emphasized the vital role their oncologist had played in their decision to do so [ 45 ].
However, some who are informed and referred for fertility preservation decline the offer. Uptake of fertility preservation is influenced by individual factors such as age, parenthood status, and satisfaction with clinic care [ 46 ], perceptions of the importance of parenthood [ 47 ], cost [ 47 ], and decisional conflict [ 48 ]. Informants in our study emphasized the need for health professionals to be non-directive when discussing fertility preservation with patients and to present the option of not proceeding as a valid choice.
They also cautioned that difficulties can arise when adolescents and their parents have diverging views about whether the young person facing cancer treatment should undergo fertility preservation. After a diagnosis of cancer, confronting a decision to freeze reproductive material can be overwhelming, coinciding as it does with such an existential threat. Although counselling about the possible impact of cancer treatment on fertility would seem to be invaluable for women, men, and adolescents, it is not always provided [ 49 , 50 ].
However, in a study of male cancer survivors, Crawshaw [ 51 ] found that fertility-related social concerns adversely affect the well-being of men facing cancer treatment and recommended discussing these matters at the time of fertility preservation. Furthermore, Chapple et al. It found that women who had received pre-cancer treatment infertility counselling by a fertility specialist reported less long-term decision regret about having or not having preserved fertility than those who did not receive counselling [ 24 ].
Informants also viewed counselling as essential for managing potentially over-optimistic expectations. They acknowledged the need to maintain the psychological benefits of hope inherent in cryopreservation, but stressed the importance of simultaneously conveying a realistic appreciation of the chance of conception from cryopreserved material. Similar cautions have been identified in relation to pregnancy and miscarriage [ 49 ]. Nevertheless, the provision of accurate information on which to base realistic expectations, particularly for fertility preservation in women, is limited because the practice is still in its infancy and long-term outcome data are scarce [ 9 , 52 ].
The limited existing evidence suggests that the rate of utilization of stored material among women who freeze oocytes or embryos before cancer treatment is low and that most post-treatment pregnancies occur spontaneously or as a result of ART with fresh oocytes [ 53 , 54 ]. Of those who used their stored sperm about half achieved fatherhood [ 55 ].
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Because storage time for reproductive material frozen before cancer treatment can span decades, informants made it clear that accurate records are both a necessity and more than usually difficult to gather and maintain. A regular newsletter and invitations to follow-up consultations were suggested as strategies to reduce the risk of loss to follow-up and improve the ability to monitor survival rates and fertility outcomes.
Birth and death registries were identified as important sources of information, contributing evidence about the safety and benefits or lack thereof of fertility preservation for various cancer diagnoses. However, despite strategies to maintain contact with people who store reproductive material, there are inherent challenges in long-term storage including maintaining contact and loss to follow-up.
Studies of men who had stored sperm before cancer treatment report low rates of return for semen analysis to monitor fertility despite invitations to do so [ 56 ] and low disposal rates [ 55 ]. Reasons for reluctance to dispose of stored sperm include fear that cancer will recur [ 45 ], fear of being told fertility has not recovered, and being pressured to dispose of banked sperm [ 57 ]. Informants also asserted that national and international registries of large numbers of patients with diverse cancers and treatments offer the best opportunity to generate evidence about fertility after cancer treatment and the potential benefits of fertility preservation.
Informants in this study are among those establishing such a registry. The cumulative data in this registry will allow clinicians to provide personalised advice to patients about the potential benefits of fertility preservation options which, in turn, will help patients to make informed decisions. Cancer-specific decision aids for fertility preservation may also be helpful [ 58 ]. This study also has limitations: Respondents were drawn from two clinical services in one state in Australia and their views and experiences may be different from those of clinicians in other parts of Australia and in other countries; there were relatively few respondents; and no nurses participated.
Follow-up studies of the reproductive outcomes of people who store reproductive material before cancer treatment are also needed. The funder had no role in the design of the study or in the collection, analysis and interpretation of data. All authors contributed to the conceptualization and design of the study, the development of the interview guide, and obtaining ethics approval. All authors approved the final manuscript.
All participants provided written informed consent to take part in the study. Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations. Additional file 1: 15K, docx Discussion Guide. DOCX 14 kb. Karin Hammarberg, Email: ude. Maggie Kirkman, Email: ude. Catharyn Stern, Email: ua. Robert I. McLachlan, Email: ua. Debra Gook, Email: ua.
Luk Rombauts, Email: ude. Beverley Vollenhoven, Email: ude. Jane R. Fisher, Email: ude. National Center for Biotechnology Information , U. Published online May Fisher 1. Author information Article notes Copyright and License information Disclaimer. Corresponding author. Received Apr 22; Accepted May 4. This article has been cited by other articles in PMC. Abstract Background Cancer treatment can diminish fertility in women and men. Methods A qualitative research model was adopted using semi-structured interviews with professionals involved in the care of people who freeze reproductive material before cancer treatment.
Results Thirteen key informants were interviewed from August to February Electronic supplementary material The online version of this article doi Keywords: Cancer, Fertility preservation, Cryopreservation, Service provision. Background Many people of reproductive age who are diagnosed with cancer hope to have children after completing treatment [ 1 , 2 ]. Method Setting In the state of Victoria, Australia, two large ART centres have been providing fertility preservation services for more than two decades. Recruitment Fertility preservation in the context of cancer treatment requires a multidisciplinary team and clinical practice evolves over time.
Procedure Face-to-face interviews were conducted from August to February by KH and JF in a location chosen by the informants and audio-recorded with their consent. Analysis Recordings were transcribed by a skilled transcriber and identifying details removed or amended. Communication between oncology and ART specialists Informants, the fertility specialists and andrologists in particular, spoke of the fundamental need for good communication between oncologists and fertility specialists. Scientist 1 Active engagement with oncologists was also seen as vital in building collaborative relationships.
Fertility specialist 1 Through these efforts, it was thought that most oncologists in Victoria now routinely discuss the potential loss of fertility and possible options to preserve fertility with patients of reproductive age who are facing cancer treatment and refer them, where appropriate, to a clinical fertility preservation service.
Managing urgency To avoid delaying initiation of cancer treatment, clinics need be able to see patients at very short notice and to give them information about the available options that helps them decide whether or not to proceed with fertility preservation. Counsellor 2 I think the key concern and the key issue is usually the time limit that we have that we have to work within. Counsellor 2 Informants also discussed the difficulties that can arise when young women are accompanied by their mothers.
Fertility specialist 1 Informants underscored the importance of explaining the process of fertility preservation in a way that enabled patients, women in particular, to be fully aware of what it involves and they expressed concern that some women appear too optimistic that the procedure will guarantee future children.
Fertility specialist 1 However, respondents did not see the need to extend counselling to men who freeze sperm before being treated for cancer. Establishing and implementing protocols, systems, and data bases The importance of establishing protocols, systems, and data bases that allow research as well as monitoring and evaluation of clinical practice, outcomes of the procedures, and patient outcomes was emphasised by all informants.
Administrator 2 It was viewed as essential to have comprehensive data collection that allows evidence to accumulate about the types of cancer and cancer treatments for which fertility preservation improves the chance of future conception, and about factors that influence successful use of stored reproductive material.
Administrator 1 The need to link clinic fertility preservation data with records in the state-based Births, Deaths and Marriages BDM Registry has become evident, as this provides crucial information about deaths and births after spontaneous pregnancies among people who do not return to use their stored reproductive material. Administrator 1 Informants discussed the value of a national registry for all fertility preservation procedures and were supportive of an initiative to establish such a registry.
Maintaining contact with patients Informants pointed out that storage of reproductive material can continue for decades and that it is essential to have systems for maintaining contact with patients and avoiding loss to follow-up. Administrator 1 One of the purposes [of a regular newsletter] was to do an update of where technology was, but it was also to, I suppose, cull out people a little bit.
Counsellor 2 It was also seen as important to have an active system for clinical follow-up to assess fertility and discuss potential need to use the stored material. Discussion This investigation makes an original contribution to knowledge in the opportunity it provides to learn from experts in fertility preservation. Acknowledgements We thank Ms Jillian Graham for transcribing the interviews. Availability of data and materials The discussion guide is available in Additional file 1.
Competing interests The authors declare that they have no competing interests. Consent for publication Not applicable. Additional file Additional file 1: 15K, docx Discussion Guide.
Contributor Information Karin Hammarberg, Email: ude. References 1. Motivations for having children after cancer - a systematic review of the literature. Eur J Cancer Care.
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Health Care Women Int. Safety and usefulness of cryopreservation of ovarian tissue to preserve fertility: a year retrospective analysis. Hum Reprod. Pacey AA. Fertility issues in survivors from adolescent cancers.
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Cancer Treat Rev. The history of sperm cryopreservation. In: Pacey A, Tomlinson M, editors. Sperm banking: Theory and practice. Cambridge: Cambridge University Press; Fertility preservation in women with breast cancer undergoing adjuvant chemotherapy: a systematic review. Fertil Steril. Fertility preservation in female oncology patients. Oocyte cryopreservation: where are we now? Hum Reprod Update. Healthy twins delivered after oocyte cryopreservation and bilateral ovariectomy for ovarian cancer.
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