Centre for Psychological Research

Empowering women of childbearing age with cancer

The Cancer, Fertility and Me study empowers women with cancer to make informed decisions about fertility preservation.

Empowering women of childbearing age with cancer

the challenge

One of the consequences of cancer treatment can be a loss of fertility and it is difficult for women with cancer to make decisions on longer-term lifestyle planning around starting a family while simultaneously addressing the immediate concerns of cancer therapy.

The Cancer, Fertility and Me study was a four-year prospective, observational mixed-method study which developed a patient decision aid (PtDA) for teenage and adult women of childbearing age, diagnosed with any cancer, who need to consider fertility preservation choices before starting cancer treatment.

The aim of this research was to develop a fertility preservation PtDA and enable cancer and fertility services to support effectively women’s fertility preservation decisions following a diagnosis of any cancer type.

Our objectives were to:

  • Develop a PtDA for use by oncology and haematology teams to support teenage and adult women (aged 16 years and older) making fertility preservation choices, whilst having a recent cancer diagnosis
  • Gather feedback on the PtDA. During this stage, the decision aid was reviewed by a wide range of key stakeholders including adult and paediatric oncologists, haematologists, nurses, fertility experts, patients, user groups and charities

The Approach

The study was funded by Yorkshire Cancer Research, and built on evidence which showed that cancer doctors need resources which enable them to support women’s fertility preservation decisions more effectively.

Women also report that they need more specialist information to help them make these decisions. Along with her team, Professor Georgina Jones, who led the study, developed a resource to be made available in oncology and haematology, so that it can be offered to women before they see a fertility expert. The availability of this resource should also better support the cancer care teams and raise awareness amongst women of this possible late effect of cancer treatment, encouraging them to seek fertility care and advice at this crucial time.

Our aim is for patients to feel better supported and more informed at the time of planning their cancer treatment and before referral to the fertility expert. It should enable women to make better informed decisions, have more focused consultations with the fertility experts and have a better opportunity to ask the right questions at the right time during the fertility consultation.

Cancer, Fertility and Me | Patient Decision Aid

The Cancer, Fertility and Me PtDA in booklet version was completed in September 2019 and made available to all female cancer patients, free of charge through a wide range of academic, clinical and professional organisations and local and national charities.

Download the booklet

The Impact

  1. Improving fertility preservation policy and practice guidelines

    The research has informed FP advice for the British Fertility Society (BFS, 2018), National Institute for Health and Care Excellence (NICE, July 2020), Human Fertilisation and Embryology Authority (HFEA, September 2020), European Society for Human Reproduction and Embryology (ESHRE, November 2020), and leading national charities including Cancer Research UK.

    The guidelines are informing the clinical practice of other organisations such as the British Menopause Society, with fertility centres across the UK acknowledging the impact they have had on clinical practice in this area.

  1. Empowering patients with cancer

    The research informed the development of the first FP PtDA for this patient group (Cancer, Fertility and Me) which was published in September 2019. As of December 2020, there have been 8,464 page views of the online resource (73% of the page views are from the UK but the rest are from overseas, demonstrating international reach).

I so wish I had been offered these options when I was first diagnosed. The CFM booklet will give women the power to help make the best decisions for themselves in conjunction with their medical teams. I hope it is adopted by all hospitals.

Anon, cancer patient
  1. Improving clinical practice

    The research has improved clinical practice by demonstrably empowering women with cancer to make FP decisions, and enabling fertility and oncology healthcare professionals to better support this patient group.

It is good to have a powerful tool to guide us and the oncologists on the best and most appropriate fertility preservation option for our patients.

Healthcare professional

I’ve directed them [patients] to the Cancer, Fertility and Me website before their telephone appointment with me and it has definitely helped with the discussion.

Healthcare professional

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