Infertility and Fertility preservation
Key people: Prof Martha Hickey, Dr Yasmin Jayasinghe, Dr Michelle Peate, Dr Jennifer Marino
There are many reasons why a person may have to address the issue of infertility. It might be something they are born with, it may be induced by treatment of certain illnesses (like cancer), or it could be a consequence of life events. Dealing with (potential) infertility can be particularly distressing. Generally, most adults consider the ability to have a child a part of their identity – even if they don’t plan to have children – and finding out that this may not be possible can be quite upsetting. We know from the infertility research that many couples who are faced with infertility go through a grieving process for the children they will never have. We can and should provide support for people who are going through this process. Fortunately for some people who are faced with potential infertility as a result of a diagnosis of illness or those who are faced with infertility as a result of circumstance, there are fertility preservation options that they may wish to undergo. However, the decision making around fertility preservation is complex and support may be needed throughout the process.
Research Projects: Paediatric and Adolescent
Preserving the fertility in children and adolescents exposed to gonadotoxic therapy
With more than 80 percent of young people surviving cancer, it is becoming increasingly important to address the impact of cancer treatment on fertility. International guidelines suggest discussion of the impact of cancer treatment on fertility, however there is no consensus regarding implementation of fertility preservation strategies in pre-pubertal children due to minimal efficacy data.
Research by the late Sarah Drew (Royal Children’s Hospital) identified a lack of information for families and children about fertility preservation. Developing best clinical practice in this area relies on multidisciplinary integration of the adult and paediatric sector.
The Paediatric and Adolescent Fertility Preservation Taskforce; a collaborative project with members from four VCCC partners (from the Women’s, Royal Children’s, University of Melbourne, and the Peter MacCallum Cancer Centre) was developed.
Collaboratively, the taskforce led by Dr Yasmin Jayasinghe, developed the first Australian Paediatric and Adolescent Fertility Preservation database for monitoring of safety and efficacy data. Its research identified that most clinicians desire guidance in confronting the ethical challenges posed by this issue, such as concerns around consent; the effectiveness of fertility preservation and the timing of discussions about fertility which occur soon after a cancer diagnosis.
Key areas of research include examination of decisional acceptance in patients and families around fertility preservation decisions, development and piloting of a world first Fertility Preservation Decision Aid for parents of children with cancer, development and piloting of electronic clinician information support tools. Lack of guidance around fertility preservation leads to uninformed decision making and disparate clinical care. It is hoped that this work will lead to better guidance and governance for clinicians and information support for families.
The taskforce hosted the first national Fertility Preservation summit in May 2016, attended by 200 national stakeholders.
Research projects: Adults
Low Literacy Decision Aid about Reproductive Choices for Younger Women with Breast Cancer (aLLIAnCE) study
When diagnosed with breast cancer, women have a lot to consider. For younger women, cancer treatment can reduce a woman’s ability to have children. This may add to the worry about their cancer, especially if they have not yet finished having children. Research has shown that some women will make choices based on whether they can have children later. This is why it is important that women know the side effects of cancer treatment, and that they understand that there are steps they can take to increase their chances of having children in the future.
It can be difficult for women to make decisions about which treatment is best for them. If people are not given quality information they may regret the choices made. This study aims to create and make available information (a decision aid) that is easy to access and to understand. The study will test how helpful the information is in assisting women to make decisions about what they can do to increase their chances of having a baby at a later date. Our decision aid will help women make informed decisions.
Fertility after cancer predictor (FoRECAsT) study
Breast cancer is the most frequently diagnosed cancer in women of reproductive age; many are diagnosed before they have started or completed their families. Fortunately, the survival rate from early breast cancer is almost 90 per cent. However, these women need to deal with the consequences of treatment such as potential infertility. Research has shown that fertility is a priority among these women and concerns about how cancer treatment impacts fertility may influence their cancer treatment decisions. Providing women with information about how their fertility will be affected by treatment will greatly inform their choices about fertility preservation before starting adjuvant treatment. While there is general information available about the potential effects of cancer treatments on fertility, there is no mechanism for obtaining personalised information about likely fertility outcomes. Current ‘calculators’ consider cancer type and treatment, but do not consider this in the context of a woman’s fertility before cancer treatment. The aim of this study is to develop an online fertility predictor targeted at young women with breast cancer. This ‘calculator’ will take into consideration both intrinsic individual fertility-related characteristics, and the likely impact of cancer treatment to produce a risk of infertility. This tool will help inform women in making decisions about their breast cancer treatments.
The evaluation of a decision aid for women considering non-medical egg freezing
There is a growing trend in developed countries for women to delay starting a family until their early 30s or later. This delay can mean that some women miss the opportunity to have children due to age-related infertility. Egg freezing can offer women the option of delaying pregnancy and lower the risk of age-related infertility. However, making choices around egg freezing and family planning is complicated because of the health, financial and psychological implications for a procedure without a guarantee of success. Although increasing numbers of women are freezing their eggs, very little is known about their understanding of egg freezing and its potential impact. Nor is it known what information women need in order to make an informed decision. The aim of this study is to investigate the decisional conflict, knowledge of egg freezing, and information needs of women considering egg freezing for non-medical reasons. Declining fertility is an urgent social and economic problem in Australia and most other developed countries. The most common and potentially avoidable factor contributing to declining fertility is advanced female age. Advances in technology mean that women now have access to egg freezing to try and overcome the effects of age-related infertility. This procedure is being widely promoted by commercial providers, but is also costly and carries potential physical and emotional risks. Currently, women are relying on information from commercial providers and internet sources such unmoderated forums and blogs. There is a need for objective and evidence-based information to support decision-making. An interactive, online decision aid for women considering egg freezing for non-medical reasons has been developed. This will be the first study to develop and evaluate a decision aid in the context of non-medical egg freezing. It is anticipated that the decision aid will lead to better understanding of fertility-related issues and educated involvement in decision making.