Childhood cancer survivors speak up at the 2013 Cancer Congress

The 2013 European Cancer Congress (ECCO) took place in Amsterdam and included sessions focusing on childhood cancer survivors. Mrs Tsirou, the president of the childhood cancer survivors’ association called “Kyttaro” (located in Greece), summarizes the main findings and observations.

Childhood cancer survivors: their point of view

The increasing population of children who have survived childhood cancer has been a positive recurring theme in pediatric oncology. While this has turned some of the attention to the long-term complications of the treatment, there is still a lot left to be desired. Main concerns are related to the process of screening for survivors who have entered adulthood, the absence of reliable personalized information, access to education and employment and many others. [1]

Long-term complications to childhood cancer treatment

Late effects such as secondary malignancies, cardiovascular disease, endocrine disorders, and cognitive and psychosocial problems, often affect quality of life. Furthermore, research on the topic revealed wide gaps in long-term effects that are not visible (or asymptomatic). In particular, specific guidelines must determine long-term screening for such effects, including when screening should begin, the screening frequency and methods, as well as the effective treatments in case health problems are identified. [2]

Quality of life in children and adolescents surviving cancer

A case-control study by a Pediatric Department in Norway focused on Quality of Life of childhood cancer survivors, especially those with brain tumors and late effects. The results showed that in order to improve their well-being, it is important to also consider their own Quality of Life reporting, and not only parents’ reports. Even if such reporting is through proxy or perceived subjectively, it can greatly enhance their long-term follow-up care and rehabilitation. [3]

Health Passport

High-quality patient care and awareness of childhood cancer survivors throughout adulthood involves a summary of their treatment, and standardized patient-specific follow-up guidelines. Oncologists, patients, parents and IT experts worked towards this direction and created a Health Passport. This Passport will provide its owner with their cancer treatment history, and recommendations in order to avoid possible risks. The approximately 500,000 European childhood cancer survivors can cross the border into adulthood, securing a healthy pathway. [4]

References

1. A. Brownsdon. What is the issue? The survivor's view point.

2. H.J. Van der Pal, L.C.M. Kremer. Non-visible subtle long-term complications to treatment - what are they, how do we find them and what do we do?

3. M. Eilertsen, T. Jozefiak, T. Rannestad, M.S. Indredavik, T. Vik. Quality of life in children and adolescents surviving cancer

4. R. Haupt(1), M. Ortali(2), S. Caruso(1), F. Bagnasco(1), C. Dellacasa(2), S. Karner(3), L. Kremer(4), A. Kienesberger(3), R. Skinner(5), L. Hjorth(6). Health Passport for risk adapted follow-up: A joint project of the ENCCA and PanCareSurFup EU consortia

Kyttaro, the Greek word for “cell”, is the name of the Association of Childhood Cancer Survivors. Association members offer their services to children and adolescents during treatment, but also to adult survivors. Mrs Tsirou has been the president since 2007.

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