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  • Periodic Report Summary 3 - PANCARELIFE (PanCare Studies in Fertility and Ototoxicity to Improve Quality of Life after Cancer during Childhood, Adolescence and Young Adulthood)

Periodic Report Summary 3 - PANCARELIFE (PanCare Studies in Fertility and Ototoxicity to Improve Quality of Life after Cancer during Childhood, Adolescence and Young Adulthood)

Project Context and Objectives:
The number of survivors of childhood cancer in Europe has steadily increased as therapies and supportive care have improved. Survival rates after childhood cancer now reach and exceed 80% in developed European countries. However, the treatments that have improved survival are harsh and cause serious late effects that can greatly reduce the long-term quality of life of survivors. It is estimated that as many as 80% of survivors have experienced at least one serious late effect by their middle years. Late effects are varied and can include impairments in quality of life, as well as infertility and inner ear problems (ototoxicity).

Managing late effects is essential to providing the best possible long-term care for survivors, after the cancer is cured. Better management of late effects is also important for health care systems - as the number of survivors increases, costs of treatment of late effects will also rise. Research is needed to develop models that match individual patients with effective treatments with the fewest possible late effects in order to prevent or minimise the impact of late effects. Survivors and their families also need evidence-based counselling and education to prevent or better manage late effects.

The goal of PanCareLIFE is to help survivors of cancer to face fewer late effects, such as fertility loss or inner ear problems, and enjoy the same quality of life and opportunities as their peers who have not had cancer. In order to prevent or reduce the impact of late effects on cancer survivors, we will study fertility, ototoxicity and quality of life.

Fertility - The effects of cancer treatments on fertility can be minimised by providing patients with counselling about their options for fertility preservation. PanCareLIFE will develop guidelines for fertility preservation, as there is little uniformity in fertility preservation care for children diagnosed with cancer. To ensure high-quality care, evidence-based clinical practice guidelines are essential. PanCareLIFE will also improve fertility outcomes for survivors by identifying risk factors for fertility impairment - better knowledge of risk for individual patients will help doctors to choose cancer treatments less likely to impair fertility and to provide appropriate fertility preservation planning.

Ototoxicity (Inner ear problems) - In order to develop more effective ways of protecting hearing in survivors, PanCareLIFE will identify both risk factors for inner ear problems. This will improve the outcomes for survivors by allowing doctors to choose treatments that will potentially reduce inner ear problems for each individual patient based on their individual risk profile.

Quality of Life - As cancer survivors live longer, cancer researchers must focus on ensuring that survivors have the best possible quality of life. PanCareLIFE will determine the main predictors of impaired quality of life in order to enable better quality of life monitoring during treatment and follow-up care for survivors.

In addition to helping survivors, PanCareLIFE will advance cancer research. The rarity of childhood cancer and differences in the way in which data from cancer studies is collected and managed make it hard to study late effects. PanCareLIFE researchers will work with other childhood cancer initiatives to develop a harmonised approach to data management that ensures that data can be used in future. The data (questionnaires and genetic samples) provided by participants in PanCareLIFE research studies are vital for these pioneering studies.

PanCareLIFE will also identify risk factors for late effects that can be used by researchers developing new clinical trials in order to promote cancer therapies with fewer late effects. Knowing an individual patient’s risk factors will help to personalise treatments and reduce side effects.

Project Results:
In order to carry out our research studies in fertility, ototoxicity and quality of life, PanCareLIFE researchers have collected lots of different information about survivors, such as what type of cancer they had, what treatments they received and their quality of life after treatment. We exceeded our initial target of 12,000 survivors and have now collected Information from over 14,000 survivors of childhood and adolescent cancer from Germany, the Netherlands, France, Switzerland, the Czech Republic, the United Kingdom, Poland, Austria, Norway and Israel in our secure central data centre in Germany. In addition to information from medical records, cancer registries and patient questionnaires, we also collected and measured 1,647 serum samples and 1,422 DNA samples, as well as over 12,000 hearing tests.

This large pool of information is now being analysed to identify ways to improve care for survivors and treatment for future childhood cancer patients. For example, what we learn will help doctors pick treatments with the lowest risk for fertility problems for girls and young women who are about to start cancer treatment and counsel them about what options are available to them. For survivors who are now adults, our research will help doctors to provide better information on future parenthood and discuss fertility preservation options. The overall aim is to improve the quality of life of survivors through our research.

Research into late effects of childhood cancer is important, but we also need to make sure that what we learn is used to improve treatment and follow-up care for survivors. Clinical guidelines make sure that what we learn is used to help doctors, survivors and their families make the best choices for treatment and follow-up care. In PanCareLIFE, we are focusing on developing clinical guidelines for fertility preservation. We have screened 7,920 abstracts and 1,064 academic papers to identify 167 studies that have evidence about fertility in survivors of childhood cancer. Using this evidence, we are now in the final stages of developing fertility recommendations that will be published for use by doctors around the world. We have also finished recruitment to an intervention about patient fertility education, and are analysing the data.

In addition to collecting data, running the intervention study and developing clinical guidelines, PanCareLIFE has been actively communicating our work to key stakeholders, including other European cancer projects and organisations for survivors of childhood cancer and their families. The communication work has built on the extensive network of researchers and survivor advocates already established by the PanCare network and sister project, PanCareSurFUp. We have developed a short video to explain what the project is about, as well as published a number of newsletters. A final conference will take place in Paris in October 2018 in connection with the PanCare network meeting, where we will share what we have learned with survivors and their families, policymakers, physicians, nurses and researchers.

Potential Impact:
PanCareLIFE will enable better care for survivors in a number of important ways. Firstly, the project will generate new evidence about fertility impairment and inner ear problems after childhood cancer therapy that will allow doctors to assess the risk of individual patients for late effects, and then to choose treatments that will be most effective against the cancer but with the lowest risk for late effects. Secondly, evidence-based guidelines for fertility preservation will be developed to allow survivors and their families to make more informed choices and better manage potential fertility late effects. Thirdly, recommendations for standardised hearing tests for before, during and after treatment will be developed in order to support better follow-up care. Lastly, an evidence-based and risk-adapted model for long-term care, including regular assessment of quality of life will be developed.

In addition to improving care for survivors, PanCareLIFE will advance cancer research. Our new evidence will not only improve our understanding of late effects and how to manage them in long-term follow-up care, but also support the development of better treatments in future. PanCareLIFE will also improve how researchers use data collected in national cancer registries, clinical trials and other studies by developing a harmonised approach for data collection. This will ensure that the data provided by cancer survivors in the past, present and future can be easily used again in future research, ensuring that the greatest possible benefits are achieved from the data.

Social and economic benefits will also arise from the project. Treatment of late effects will place an increasing burden on healthcare systems as the number of survivors of childhood cancer rises. Prevention of late effects through more personalised treatment decisions and better management of late effects during follow-up care will reduce associated health care costs. Improvements to survivor quality of life will also have social benefits as survivors are more likely to remain productive members of society, requiring less support from families and other carers.

Delivering these impacts is a key focus of the project. Since the beginning of the project, PanCareLIFE researchers have been actively engaging with survivor organisations, cancer researchers, the general public and the media to establish communication channels. As we work to collect our data and complete our research, our focus has been on introducing the project and its aims, but we will begin to communicate project results as they are generated. In future, links with clinical trialists, healthcare providers and policymakers will also be established, as these stakeholders are essential for ensuring that the research results of the project are translated into practice in healthcare systems.
List of Websites:
pancarelife.eu

Reported by

UNIVERSITAETSMEDIZIN DER JOHANNES GUTENBERG-UNIVERSITAET MAINZ
Germany

Subjects

Life Sciences
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