EU project to improve follow-up care after childhood cancer

Childhood cancer survivors, though being 'cured' of cancer, often experience late physical and psychological effects secondary to their cancer or its treatment. To accelerate the search for new successful treatments and improve the quality of life after cancer, 16 research institutes from 11 European countries have decided to join forces and launch a groundbreaking study funded by the EU.

The PANCARESURFUP (Pancare childhood and adolescent cancer survivor care and follow-up studies) project, which has received almost EUR 6 million under the Health Theme of the EU's Seventh Framework Programme (FP7), kicks off at the end of this week in Lund, Sweden.

Coordinating the PANCARESURFUP project is paediatric oncologist Lars Hjorth from Lund University in Sweden. Epidemiologist Julie Byrne with the Boyne Research Institute in Ireland is also involved in the project, along with 34 other specialists.

Building on the recent advances of paediatric cancer research, this five-year project is committed to ensuring that more adolescents and young adults gain access to clinical trials.

So far, this age group has been highly under-represented in cancer trials, mainly because adolescents and young adults are not usually referred to paediatric cancer centres for treatment. And yet, these are precisely the institutions that offer the most appropriate trials for adolescent cancers which are different to the types of cancer common in adults.

Furthermore, experts predict that almost 20,000 young people aged up to 19 years will be diagnosed with cancer this year. Early diagnosis and new revolutionary treatment approaches increases the cure rate. The good news is that currently 80% of children and adolescents are expected to survive.

However, many of these survivors may face significant long-term risks to their health and well-being. The most serious health risks are late recurrence of the disease, as well as second cancers, cardiovascular diseases, endocrinological and neuropsychological abnormalities.

Although late effects of cancer treatment are not unique to survivors of childhood cancer, since the cancer treatment is received during periods of growth and development, they are usually more severe than those experienced by adult cancer survivors. Knowledge of health risks can result in changes in therapy to obviate untoward effects.

For example, radiation therapy is now rarely used in the treatment of Hodgkin's disease in children, and the maximum total dose of anthracylines (class of drugs used in chemotherapy) has been reduced significantly. Still, information is lacking about how decreasing the intensity of existing treatments or innovative cancer treatments may affect the observed late effects.

This lack of knowledge of long-term side effects provides the rationale for lifelong surveillance of survivors at risk. It should be noted that not all childhood cancer survivors are at risk from late effects and, therefore, surveillance recommendations should be risk-based.

And that is exactly the aim of the PANCARESURFUP project - to develop evidence-based guidelines for long-term care of childhood cancer survivors. A cohort of more than 80,000 survivors will be the backbone of a series of etiological studies on the consequences of cancer therapies.

Among the survivors of childhood cancer is 24-year-old Linnea Renholm Persson, the project partners say. At the age of 12, she was diagnosed with a type of cancer known as acute myeloid leukaemia. After six months of intense treatment, she gradually recovered without having to undergo an arduous bone marrow transplant.

Through careful follow-up surveillance after therapy, valuable information can become available on the health and well-being of Linnea and other childhood cancer survivors. A better understanding of what to expect after cancer treatment can then help patients and their doctors plan for follow-up care and make important health-related decisions.

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