In Canada, 4250 reproductive-age women (20 to 39 years of age) are diagnosed with cancer every year.1 It is estimated that 40-70% of these women will experience a reduction in fertility as a result of their cancer treatment.2 Infertility may present itself in various forms including inability to produce eggs, inability to conceive, or an inability to carry a pregnancy to term.3 There is a growing body of medical literature that describes and explores topics related to oncofertility among young women with cancer. Specifically, in the last few years, there have been a number of articles published that focus on barriers and facilitators that patients and health care providers face when having fertility discussions, issues related to fertility referral and arising during fertility consultation, and how services and resources are being used to aid women and their providers in the management of fertility.
Lack of awareness of fertility risk and costs associated with fertility treatments are some of the various barriers that young women have been showed to be faced with when pursuing fertility preservation.4-6 There are also provider-related factors that may hinder the success of discussions with patients including their attitudes and perceptions of patients’ priorities and knowledge around treatment-related infertility, as well as the documented success rates of potential preservation options.13,14 The process is also affected by by institutional barriers such as inadequate guidelines for fertility preservation and a lack of professional services and fertility centres.5,7
Patients are often shocked when confronted with a diagnosis of cancer and it may be difficult for patients to make urgent decisions about their future fertility in an informed way. A desire to have future children, the time required to complete fertility preservation treatments and the wishes of a patient’s partner and family are a few of the most influential factors.4,8-12 The majority of cancer patients, especially those that are younger and without children, express a strong desire to receive fertility-related information, however the proportion of patients who receive information ranges greatly, from only a few women to approximately 85%.13,14 Generally, women who express a pre-treatment desire to have children are more likely to receive information on fertility matters whereas older women (35 – 40 years of age) are less likely to be informed of infertility risk.14 Fertility counseling prior to the start of cancer treatment has been associated with reduced long-term decisional regret, reductions in anxiety and depression and greater overall satisfaction with life.15,16 Educational materials can further facilitate the dissemination of fertility information however, the availability and quality of such resources is limited.14,17 In Australia, a decision aid has been developed to help young women with breast cancer in making fertility-related decisions.18 This decision aid has been shown to reduce decisional conflict and regret and improve fertility-related knowledge thus promoting informed decision-making. Many practitioners would welcome tools to facilitate these discussions with their patients.19
Currently, there is no tool available specifically designed to assist Canadian women with oncofertility decision-making at the time of cancer diagnosis. The majority of research exploring oncofertility decision-making has been American or British in nature and may not be directly relevant to practices in our own setting. Such a resource has the potential to improve knowledge and reduce decisional conflict and regret. There is a growing interest in resources available for practitioners, such as education modules on preservation options and referral strategies to fertility clinics. Recently, the Cancer Knowledge Network designed the Oncofertility Referral Network, an internet-based navigation system designed to help practitioners refer patients to fertility clinics in Canada.20 While the availability of internet-based resources for practitioners has increased, there is still a need for an aid that can be used during face-to-face counselling between a practitioner and patient, incorporating patient knowledge and preferences to guide a shared decision-making approach. Our multi-disciplinary research team is conducting a study to investigate the needs of women and their providers when faced with making timely fertility decisions. We are interested in using data generated from patient and provider interviews paired with what medical literature currently suggests to design a decision aid that can be used by practitioners to consult and counsel women about fertility options and preferences for children. Our study will have a direct impact on young women with cancer and the resources available to help improve the quality of fertility-related decision.
This research is funded by the Canadian Cancer Society (grant #702601)
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2. Adams E, Hill E, Watson E. Fertility preservation in cancer survivors: a national survey of oncologists’ current knowledge, practice and attitudes. Br J Cancer. 2013;108(8):1602-1615.
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15. Letourneau JME, Erin E.; Katz, Patricia P.; Katz, Audra; Ai, Wei Z.; Chien, A. Jo; Melisko, Michelle E.; Cedars, Marcelle I.; Rosen, Mitchell P. Pretreatment fertility counseling and fertility preservation improve quality of life in reproductive age women with cancer. Cancer. Mar 15 2012;118(6):1710-1717.
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17. Nagel KC, Jane; Wizowski, Lindsay; Neal, Michael S. Collaborative multidisciplinary team approach to fertility issues among adolescent and young adult cancer patients. Int J Nurs Pract. Aug 2009;15(4):311-317.
18. Peate MM, B.; Cheah, B. C.; Saunders, C.; Butow, P.; Thewes, B.; Hart, R.; Phillips, K. A.; Hickey, M.; Friedlander, M. Making hard choices easier: a prospective, multicentre study to assess the efficacy of a fertility-related decision aid in young women with early-stage breast cancer. Br J Cancer. Mar 13 2012;106(6):1053-1061.
19. Vadaparampil SQ, Gwendolyn; King, Lindsey; Wilson, Crystal; Nieder, Michael. Barriers to fertility preservation among pediatric oncologists. Patient Education & Counseling. Sep 2008;72(3):402-410.
20. Cancer Knowledge Network. Oncofertility Referral Network. 2014; https://cancerkn.com/oncofertility-referral-network/. Accessed April 23, 2014.
Dr. Nancy Baxter obtained her MD from University of Toronto and then completed general surgery training and her PhD in Clinical Epidemiology at UofT. She completed her board certification in colon and rectal surgery at the Mayo Clinic and is a Fellow of the American Society of Colon and Rectal Surgeons. Currently, she is a practicing colorectal surgeon and the acting head of the Division of General Surgery, at St. Michael’s Hospital. She holds a Scientist position with the Keenan Research Centre of the Li Ki Shing Knowledge Institute.
Dr. Baxter is an Associate Professor in the Department of Surgery, Institute of Health Policy, Management and Evaluation and Institute of Medical Science at the University of Toronto and an Adjunct Scientist at the Institute for Clinical Evaluative Sciences (ICES). She is a health services researcher interested in the effectiveness of cancer screening, long-term survivorship of cancer survivors and quality of surgical care. She holds the Cancer Care Ontario Chair in Health Services Research.