Each year, more than 150,000 people in Europe in the AYA age range of 15-39 years, and over 1.2 million worldwide, are diagnosed with cancer. This is equivalent to nearly 7% of all cancers. (2)<\/p>\n
S., a 21-year-old patient with a rhabdomyosarcoma of the trunk, recalls that when he finally received the correct diagnosis, he was told to travel to another city where there was the only specialised centre for his rare cancer. \u201cThey told me that even at 21, I would be hospitalised in a paediatric oncology unit, because the only experts for my disease were there,\u201d he says.<\/p>\n
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<\/figure>\n<\/div>\n<\/div>\n\u201cThese patients are a unique group who inhabit a middle ground between the paediatric and the adult worlds of oncology, and their management is still a challenge,\u201d underlines Dr Andrea Ferrari, Pediatric Oncology Unit, Fondazione IRCCS Istituto Nazionale Tumori, Milan, Italy, lead author of the paper and SIOPE Co-Chair of the joint ESMO\/SIOPE AYA Working Group. \u201cThey may present with paediatric- or adult-type tumours and there is limited awareness both within the general population and the medical and scientific community that cancer can arise at this age. In addition, there is the serious problem of access to quality care and specially designed clinical trials, and last but not least the specific and complex psychosocial considerations in this age group. Together, these critical determining factors impact on treatment outcomes and optimal care for these patients,\u201d he says.<\/p>\n
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<\/figure>\n<\/div>\n<\/div>\n\u201cThere is an under-provision and inequity of cancer care offered to this group of patients: \u2018speaking the same language\u2019 and fostering professional collaboration are really key to finding common ground and building something which is tailored to the unique needs of these patients,\u201d says Emmanouil Saloustros, Department of Oncology, University Hospital of Larissa, Larissa, Greece, ESMO Co-Chair of the joint ESMO\/SIOPE AYA Working Group. <\/p>\n
The ESMO\/SIOPE position paper highlights the key challenges of AYA care as a lack of understanding of cancer biology in this group, limited availability of specialised centres with age-appropriate multidisciplinary care and poor access to clinical trials of novel therapies. It also suggests that modest improvements in survival in the AYA age group compared to children and older adults with cancer reflect inequalities in care.<\/p>\n
The ESMO\/SIOPE AYA joint Working Group is committed to supporting both medical and paediatric oncologists by increasing awareness of AYA patients\u2019 needs, encouraging the development of ad-hoc education and advocating for an increase in research capacities in tumour types. \u201cEducating oncologists on the characteristics of the diseases in this age group is a first step,\u201d says Ferrari. \u201cIt is similarly important to raise awareness beyond the medical communities, because the knock-on effects of adolescents and young adults being diagnosed with cancer are far broader and longer term.\u201d<\/p>\n
\u201cWhen I had to move to another city, I had to give up everything \u2013 university, my girlfriend, my friends. I packed my luggage with a lot of fear, a little courage and a little determination, and also a lot of hope. And I left for this journey, with uncertain and limping steps,\u201d says S.<\/p>\n
The Working Group calls for healthcare professionals from different disciplines, patient advocates and stakeholders to focus collectively on the specific challenges of AYA cancer, taking account of the changing physical and psychosocial needs of patients in this age group.<\/p>\n
The position paper also suggests that centralisation of care into dedicated and financially well-supported specialist AYA services and networks is needed to improve care and facilitate access to clinical trials of novel therapies for all eligible patients, with potential for improved outcomes for AYAs with cancer.<\/p>\n
S. says: \u201cIt is important we can have a way to tell our stories. We feel we have an important responsibility; we are witnesses and together with our doctors, we want to make it known that teenagers and young adults can have cancer too, and they can be cured, but only if they receive the best treatment at the right time.\u201d<\/p>\n
ESMO and SIOPE<\/a> are committed to improving education and care of people with cancer and established the joint Cancer in AYA Working Group in 2015. The goal of the Working Group is to increase awareness among adult and paediatric haemato-oncology communities, enhance knowledge on specific issues in AYA, and ultimately, to improve the care of AYA with cancer across Europe. <\/p>\n ESMO Press Office: media@esmo.org<\/a><\/p>\n SIOP Europe Communications Office: office@siope.eu<\/a><\/p>\nReferences <\/h4>\n
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Notes to Editors <\/h4>\n
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