Young people with cancer face inequalities in fertility preservation services in the UK

Young people who survive cancer risk missing out on the chance to have children in the future, due to inequalities in fertility preservation services in the UK, new research shows.

The study, published today in Childhood Illness Archives, found significant gaps in the provision and funding of these services for children with cancer.

Preserving fertility involves removing sperm, mature eggs, or tissue from the testes or ovaries to freeze and store them until needed.

Researchers across the UK, led by the University of Leeds and the Leeds Teaching Hospitals NHS Trust, are calling for central NHS funding to be made available to ensure equal access to fertility preservation for all children with cancer across the UK.

About 1,800 children aged 0-14 are diagnosed with cancer each year in the UK, and up to a fifth of the disease – or its treatment – causes significant damage to their reproductive organs and threatens their future fertility. National and international guidelines indicate that fertility preservation treatment should be available and should be offered as appropriate in these cases. But research has revealed serious inconsistencies in what is offered to children.

The main inconsistency was that the storage of sperm and mature eggs, for children who had reached puberty, was generally funded by the NHS, but the storage of testicular and ovarian tissue, for younger children or older children too. patients to store mature eggs, was generally not funded. by the NHS.

“It gave me hope”

Lauren Shute was 17 when she was diagnosed with lymphoma, a rare type of cancer, in 2013. Prior to chemotherapy and radiation therapy, Lauren was offered fertility preservation treatment. She was too ill to go through the two to three week procedure to procure and store her mature eggs. Instead, Lauren had ovarian tissue containing her immature eggs removed and cryopreserved to protect her future fertility. It was as part of a charity program. Lauren’s cancer treatment was successful and she has been in remission since 2014.

Lauren is now 25, works in financial services and lives in High Wycombe. She said: “I think in the back of my mind preserving fertility gave me some hope that the doctors didn’t think it was going to kill me, but rather that I would survive it. life after my cancer, so it gave me hope that there would be a time after that, that things would work out.
“If I decide I want children in the future, my tissues could be reintroduced into my body to restore my fertility. And because my tissues are stored for so long, I don’t feel any pressure to have to rush to do a ruling on this, so I’m really lucky.

“I feel so grateful for the opportunity this has given me, but also sad and often guilty that it is not available to all the children who need it. It seems unfair to me that there could be funding. for it for one person but not for someone else, especially when we now have the capacity to do these procedures.
“I was lucky that there was money available through a charity to preserve some of my ovarian tissue, but more stable funding for tissue preservation through the NHS would be amazing, to ensure that every child has the same opportunity as me. “

Professor Adam Glaser, pediatric oncologist at the University of Leeds and Leeds Teaching Hospitals NHS Trust and senior research author, said: “We are now very successful in treating childhood cancer, with over 80% of children who survive the disease. it is all the more important that the future life choices and potential of these children are not reduced by their cancer.

Choosing to preserve fertility is not a simple choice, it requires specialized expertise in oncofertility and often involves surgery at the time of cancer diagnosis. Additional funding uncertainties are putting additional pressure on families at a very difficult time. Having consistent funding from a central source would remove at least one of the barriers that currently exist in some regions. “

Adam Glaser, Professor, Pediatric Oncologist, University of Leeds

“In addition, it is important that funding for the storage of eggs, sperm or tissue lasts the reproductive life of these children, rather than ending after an arbitrary period that may fall before they are ready to do so. choices for starting a family. “

Inconsistent services across the UK

The research team analyzed questionnaire responses to the question from 18 out of 20 pediatric cancer centers in the UK, 13 in England and five in decentralized countries. The centers were asked about the references for the different fertility preservation options, how these were funded and how long the funding lasted.

All centers had made referrals for the collection and storage of sperm and ovarian tissue, and fifteen centers had made referrals for the collection and storage of testicular tissue. However, only six in the UK had made referrals for egg collection and storage, and this ranged from three of the five centers in decentralized countries to none in the Midlands and east of England.

The sources of funding were also very uneven. Funding for fertility services is currently determined by local clinical commissioning groups and therefore varies by region.

Of the 15 centers that knew their funding sources, all said NHS funding was available for sperm storage for post-puberty boys, and nine (60%) said it was available for sperm storage. ‘mature eggs.
All centers in decentralized countries were able to access NHS or research funding for storage of testicular and ovarian tissue. But in England, nine of 10 centers said no NHS funding was available and they were relying on charitable sources to fund the service.

Research has also shown great variation in the length of time to fund the storage of mature sperm and ova, with funding of less than five years in some cases, while in others the storage was funded indefinitely.

In addition to calling for centralized funding to cover an appropriate storage period, the researchers also recommend that a national advisory committee be established to help clinicians decide which children should be given the choice to preserve fertility.

The panel would be made up of experts from different disciplines, including oncologists, gynecologists, psychologists, fertility experts and surgeons.

These recommendations would help reduce geographic disparities, according to co-author Professor Helen Picton, a biomedical scientist and oncofertility specialist at the University of Leeds, who is also the Scientific Director of Leeds Fertility at the Leeds Teaching Hospitals NHS Trust.

Professor Picton said: “Fortunately, childhood cancer is relatively rare, but this makes it more difficult for clinicians to decide whether treatment will impact future fertility. As cancer treatment outcomes continue to improve, it becomes increasingly important that young patients have the opportunity to access fertility preservation services that will allow them to maintain their future fertility and to keep them healthy. improve their quality of life after surviving cancer. Having a team of experts available to provide advice and support will help ensure a more consistent approach is used across the country. “

The research was carried out on behalf of the Children’s Cancer and Leukemia Group, the umbrella organization for the specialized centers. Professor Richard Grundy, University of Nottingham, who chairs the group, said: “Having survived a life-threatening disease, it behooves us to maximize the quality of that survival; fertility preservation options provide vital future hope for children and their parents. It stands to reason that such options should be available uniformly across the UK. “

Co-author of the research, Dr Sheila Lane, pediatric oncologist at the Oxford University Hospitals NHS Foundation Trust, and clinical director of the Future Fertility Program Oxford, a service providing fertility preservation treatment to children in England, said : “The impact of infertility at a very young age is devastating. Every day we see the difference that fertility treatment offered to children and their families. At diagnosis, it offers hope and a vision of the future that many may not believe is possible and in the long term, it gives them the confidence to build relationships knowing that their life choices are not defined by their cancer and infertility. access to fertility treatment for boys and girls is essential. We must be able to provide our children with the treatment they deserve and is available in other countries with similar health systems. areas.