Leeds Beckett University - City Campus,
Woodhouse Lane,
LS1 3HE
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.
the challenge
Professor Georgina Jones, Professor of Health Psychology at Leeds Beckett University, is working on developing tools that support patients to make difficult treatment decisions. She is currently leading the Cancer, Fertility & Me study, which addresses the challenge of fertility preservation in women of childbearing age diagnosed with cancer.
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. Usually, patients must make a decision on preserving their fertility within days. The challenge for these patients and the clinicians advising them is taking a decision that reflects their plans for the future, at very short notice, while bearing the stress of their cancer diagnosis.
The Approach
The Cancer, Fertility & Me study is designed to support female patients with a cancer diagnosis in making informed decisions around preserving their fertility before starting treatment, which can severely affect their ability to have a biological child in the future. This is done through a patient decision aid resource which has been developed and put into practice initially for female patients aged 16-45, but a version targeted for the 16-25 age group soon followed, all funded by Yorkshire Cancer Research.
The resource addresses the psychological consequences of loss of fertility due to cancer treatment and the added pressures of making a decision on fertility preservation at very short notice. Professor Jones and the team on the Cancer, Fertility & Me project are working to develop a patient decision aid for parents of children with a cancer diagnosis and also for teenage boys and men.
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.
The Impact
The Cancer, Fertility & Me patient decision aid in booklet version is now available to all female cancer patients, free of charge, through a wide range of academic, clinical and professional organisations and local and national charities. It has been endorsed by the National Institute for Health and Care Excellence (NICE) and the International Patient Decision Aids Standards Committee, achieving full marks as a resource to support patient decision-making. It is currently being translated into French, German, Italian, Spanish and Dutch, which will make it accessible throughout Europe. This will allow cancer patients outside of the UK to receive the expert support and guidance they need to make the best decision on fertility preservation.
Cancer, Fertility and Me | Patient Decision Aid
The Cancer, Fertility & Me website has had 20,000 visitors since its launch and hundreds of patients and clinicians have spoken about how much the resource has helped them. During the study, Professor Jones and her team worked with patients to assess how important fertility preservation is and the hope it gives to people diagnosed with cancer. The decision aid strengthens that hope and, in many cases, makes it possible for patients who are not aware fertility preservation is an option, or who did not previously have access to enough information to support their decision.
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