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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.
Every effort has been made to provide accurate and complete information in the Cancer, Fertility and Me resource at the time of publication (September, 2019). However, if you have any questions please contact Professor Georgina Jones - email@example.com.
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 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.
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.
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.
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.
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.
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who we are
The wider team involved in this study is multi-disciplinary and has extensive experience clinically and methodologically in the fields of adult and paediatric oncology, haematology, reproductive medicine, psychology and decision-making, and health services research. Breast Cancer Care, the North Trent Cancer Research Network Consumer Research Panel, Weston Park Hospital Cancer Charity and the Independent Cancer Patients’ Voice charity also collaborated on this study.
Alison was diagnosed with breast cancer in 2007 and was not given the opportunity for fertility preservation - she now understands that this policy has been altered within NHS Lothian. Alison is also a member of Independent Cancer Patient Voices and is actively involved in representing Patient’s views on a number of research projects.
Dr Bob Phillips
Bob works for the CRD at the University of York. His main area of work is in the development of individual participant data (IPD) meta-analysis, and the development of skills in appraisal and translation of clinical research in practice. He is the lead of the collaboration, “Predicting Infectious Complications In Children with Cancer".
Dr Dan Yeomanson
Dan is a paediatric oncologist with an interest in Teenage and Young Adult (TYA) issues. He is a member of the Children’s Cancer and Leukaemia Group (CCLG), sits on the Teenagers and Young Adults with Cancer (TYAC) Research and is part of the Sheffield Children’s Hospital Young Person’s Working Group.
Professor Diane Greenfield
Prof Diana Greenfield is Consultant Nurse in Late Effects at Sheffield Teaching Hospitals NHS Foundation Trust, Honorary Professor in Cancer Survivorship in the Department of Oncology and Metabolism, University of Sheffield and Senior Nurse Research Leader on the National Institute for Health Research 70@70 programme.
Dr Ellissa Baskind
Dr Baskind is a Senior Registrar at Leeds Centre for Reproductive Medicine (LCRM) within Leeds Teaching Hospitals NHS Trust. She is currently a Sub-Speciality Trainee in Reproductive Medicine, and has worked in this field for over ten years. Dr Baskind received a Commendation from The University of Leeds for her MD in Reproductive Medicine.
Professor Galina Velikova
Professor Velikova's clinical work focuses on systemic treatment of breast cancer patients with early and advanced disease. Professor Velikova leads a research group to study the implementation of routine measurement of patient-reported outcomes and quality of life in oncology practice, originally funded by Cancer Research UK.
Professor Georgina Jones
Georgina Jones is a Professor of Health Psychology. Her research uses both quantitative and qualitative research methods and focuses on quality of life measurement, psychometrics, decision-making and questionnaire development, with a special focus on women's health.
Greate Brauten Smith
Grete's role is a unique one, helping her to focus and lead on the support and information needs of younger women with breast cancer and promote awareness of these needs across the UK. Grete is also involved in the development and delivery of the Younger Women Together events.
Professor Hilary L Bekker
Professor Bekker is a chartered psychologist who studies how people make decisions, what boosts or hinders people’s decisions about healthcare options, and why using patient decision aids helps patients make reasoned treatment choices, designing over 40 patient decision aids to be used by patients.
Jacqui has many commitments in the field of patient advocacy including palliative care research, and has been able to use her professional experience of website design and work in IT to good effect.
Jane has a background in Economics and previously worked at Sheffield University in the Health Economics and Decision Science Unit on several NIHR-funded health research studies. Her research uses both quantitative and qualitative research methods and focuses on decision-making and questionnaire development, with a special focus on cancer.
Jonathan was senior IVF co-ordinator at the Hammersmith Hospital. In 1997, he then worked as a Clinical Lecturer at the University of Sheffield. He plays a key role in helping develop regional NHS fertility services. He is an expert adviser for the Specialised Commissioning Groups in Yorkshire and the East Midlands.
Professor Snowden has published around 200 clinical and scientific articles, reviews and book chapters, and led on key national and international clinical guidelines. He was elected as Chair to the EBMT Autoimmune Disease Working Party (ADWP). He is also the current Chair of JACIE, overseeing accreditation of BMT programmes in Europe.
Professor Karen Collins
Professor Karen Collins is Professor of Health Services Research. She has worked within the Centre for Health and Social Care Research at Sheffield Hallam since 2007. She spent the previous 15 years working at the University of Sheffield both within the School of Health and the Academic Unit of Supportive Care.
Dr Neda Mahmoodi
Neda Mahmoodi is a Chartered Psychologist. She joined the School of Social Sciences at Leeds Beckett University in 2017 as a Senior Lecturer in Psychology.
Dr Richard Jacques
Richard graduated with a BSc(Hons) in Mathematics from the University of Hull and an MSc in Statistics from the University of Sheffield. For his PhD he worked on an Engineering and Physical Sciences Research Council (EPSRC) CASE funded project with AstraZeneca investigating methods of classification for high content screening data.
Dr Sheila Lane
Dr Lane specialises in the management of long term complications of cancer treatment and has set up a comprehensive long term children’s cancer follow up programme in Oxford. She is also the Clinical Director for the Oxford Fertility Tissue Cryopreservation Programme.
Tonia lives in London, working as a Digital Project Manager. In Sept 2007, Tonia was diagnosed with cervical cancer and underwent a radical trachelectomy, followed by radiotherapy and chemotherapy. This led to her being unable to have children of her own. Tonia has been cancer free for over 9 years and with her husband has now adopted a son.
Dr Frances Darby
Kathy has worked as a Research Assistant in the School of Social Sciences at Leeds Beckett University, working exclusively on the Cancer, Fertility and Me study whilst completing her PhD. In 2018 she presented the study’s findings at the IPOS World Congress of Psycho-Oncology in Hong Kong.
Dr Dan Stark
Dr Stark has been the medical lead for the cancer service for young people in the Yorkshire region since about 2006. He has played his part in building a specialist clinical service for young people in Leeds since the late 1990s. He has been at the heart of several European initiatives in Teenage and Young Adult cancer since 2010.
Dr Mariano Mascarenhas
Mariano is a clinical fellow at Leeds Fertility, part of the Leeds Teaching Hospitals NHS Trust. He completed his medical training in India. He received the gold medal for his Batch in obstetrics and gynaecology from the Prime Minister of India in 2012 and the Young Clinician award from the British Fertility Society in 2018.
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