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PanCare Studies in Fertility and Ototoxicity to Improve Quality of Life after Cancer during Childhood, Adolescence and Young Adulthood

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Better risk management of late effects in childhood cancer survivors

As childhood cancer treatments have improved, increased survival rates have highlighted the impact of late effects on health-related quality of life. One project sets out a path for more effective risk management.

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More effective treatment, alongside better care, has increased the survival rates of European children diagnosed with a cancer, to nearly 80%. However, life-saving treatments are harsh and come with significant side-effects, impairing quality of life for survivors. The goal of the EU-supported PanCareLIFE project was to enable cancer survivors, diagnosed before 25 years of age, to experience improved quality of life. PanCareLIFE collected and analysed large data-sets from over 14 000 survivors of childhood and adolescent cancer. They identified risk factors, relevant for future treatments, that could give patients the best chance of survival with the fewest late effects, while also contributing to new treatments. Identifying late effect risk factors Over 25 % of childhood cancer survivors have a severe or life-threatening complication, such as another cancer or heart disease. But more, perhaps as many as 75 %, have at least one late effect occurring months or even years after treatment. The growing number of survivors with late effects puts a strain on medical and psychosocial health services. PanCareLIFE sought to improve understanding about the risk factors for three late effects: fertility, hearing impairment and health-related quality of life. Data from providers across Europe, including cancer registries, hospitals and clinical trials, was sent to a central data centre for checking and compilation before being sent to specialists for data analysis. The data contained details such as: what type of cancer patients had; what treatment they had received; genetic factors (e.g. from saliva samples); information on fertility, and audiometric data (hearing impairment). The teams then analysed the data to identify risk factors. “The published results will be used by clinicians to develop better treatments, improving care for survivors, and reducing the complications of treatments” says Research Manager Dr Julie Byrne. “We also developed clinical guidelines, soon to be published, for fertility preservation, including educational resources about managing fertility impairment in survivors.” A non-specialist English version of the guidelines will be available for survivors, to help them manage their own long-term care. Additionally, PanCareLIFE’s results will be published and disseminated by the Pan-European Network for Care of Survivors after Childhood and Adolescent Cancer PanCare, by the Childhood Cancer International organisation for parents and survivors (CCI), as well as contributing to clinical guidelines developed by the International Guideline Harmonization Group for Late Effects of Childhood Cancer. “The large amount of data, along with our protocols for collection and harmonisation, can now help others conduct further studies,” says Dr Desiree Grabow, a member of the Management team. PanCareLIFE’s increased understanding of late effect risks will enable doctors to choose the most effective treatments based on risk profiles. The project will also help follow-up healthcare professionals know which survivors would benefit from interventions during or after cancer treatment (such as fertility preservation), and which need closer monitoring for certain late effects. It also contributes to the work of researchers developing new treatments. “Studying late effects is challenging as childhood cancer is rare and the number of survivors with a given late effect is small, so international collaboration is necessary,” says Dr Peter Kaatsch, project coordinator. “We have assembled a truly multi-disciplinary team of researchers and clinicians, with strong links to networks of key stakeholders that will live on beyond the project.” Indeed, the PanCareLIFE consortium has already identified areas for continued collaboration. For example, members recently started the (PanCareFollowUp) project, developing and assessing person-centred survivorship care.


PANCARELIFE, cancer, treatment, late effects, side-effects, risk, fertility, childhood, survivor

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