- ESMO / SIOPE expert article raises awareness of the need for age-appropriate specialist services to improve cancer outcomes
- Unique tumor epidemiology, poor awareness, difficult access to targeted care and clinical trials, complex psychosocial aspects can negatively affect disease outcome
Lugano, Switzerland; Brussels, Belgium, April 8, 2021 – Adolescents and young adults (AYA) with cancer often miss age-appropriate specialist care due to a lack of awareness of how their needs differ from the needs of children and older adults with cancer.
The newly published position paper of the AYA Working Group of ESMO and the European Society of Pediatric Oncology (SIOPE) defines a common vision for improving the outcomes of AYA with cancer in Europe. (1, 2) His recommendations include collaboration between various specialized AYA care professionals, the development of services tailored to the needs of AYA cancer patients, and specific measures to include more patients of this age group in clinical trials.
Every year, more than 150,000 people in Europe in the AYA age range of 15 to 39 and over 1.2 million worldwide are diagnosed with cancer. This is approximately 7% of all cancers. (3)
S., a 21-year-old patient with 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 specialized center for his rare cancer. “They told me that even at the age of 21, I would be hospitalized in the children’s oncology unit because they were the only specialists there for my disease,” he says.
“These patients are a unique group that lives in the middle between the pediatric and adult world of oncology, and their management is still a challenge,” emphasizes Dr. Andrea Ferrari, Department of Pediatric Oncology, Fondazione IRCCS Istituto Nazionale Tumori, Milan, Italy, lead author and SIOPE co-chair of the joint ESMO / SIOPE AYA working group. “They can present with pediatric or adult-type tumors and there is limited awareness among both the general population and the medical and scientific community that cancer can occur at this age. In addition, there is a serious problem with access to quality care and specially designed clinical trials. and, last but not least, specific and complex psychosocial considerations in this age group. Together, these critical deciding factors influence treatment outcomes and optimal care for these patients, “he says.
“There is insufficient provision and inequality of cancer protection offered to this group of patients:‘ speaking the same language ’and fostering professional collaboration are really key to finding a common language and building something tailored to the unique needs of these patients,” says Emmanouil Saloustros, Oncology Department , Larissa University Hospital, Larissa, Greece, ES-Co-Chair of the ESMO / SIOPE AYA Joint Working Group.
The ESMO / SIOPE position report highlights key AYA care challenges such as a lack of understanding of cancer biology in this group, limited availability of specialized age-appropriate multidisciplinary care centers, and poor access to clinical trials of new 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.
The ESMO / SIOPE AYA Joint Working Group is committed to supporting both medical and pediatric oncologists by raising awareness of the needs of patients with AYA, encouraging the development of ad hoc education and advocating for increased research capacity in tumor types. “The first step is to educate oncologists about the characteristics of the disease in this age group,” Ferrari says. “It’s equally important to raise awareness outside the medical community, because the impacts of adolescents and young adults diagnosed with cancer are far broader and longer-term.”
“When I had to move to another city, I had to give up everything – university, girlfriends, friends. I packed my bags with a lot of fear, a little courage and a little determination, and also a lot of hope. And I went on this trip, insecure and lame steps, “says S.
The working group calls on healthcare professionals from different disciplines, patient advocates and stakeholders to collectively focus on the specific challenges of AYA cancer, taking into account the changing physical and psychosocial needs of patients in this age group.
The position paper also suggests that centralization 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 new therapies for all eligible patients, with the potential for improved outcomes for AYA with cancer.
S. says: “It is important that we can have a way to tell our stories. We believe we have an important responsibility; we are witnesses and together with our doctors we want to make it known that both teenagers and young people can have cancer and they can be cured, but only if they get the best treatment at the right time. ”
ESMO and SIOPE are committed to improving the education and care of cancer patients and have established a joint organization to fight cancer in the AYA Working Group 2015. The aim of the Working Group is to raise awareness among adult and pediatric hemato-oncological communities, improve knowledge on specific issues in AYA -and, and finally, to improve AYA’s cancer care across Europe.
ESMO press service: [email protected]
SIOP Europe Communications Office: [email protected]
(1) Ferrari A, Stark D, Peccatori FA and others. Adolescents and young adults (AYA) with cancer: AYA position paper of the Working Group of the European Society of Medical Oncology (ESMO) and the European Society of Pediatric Oncology (SIOPE). ESMO Open. DOI: 10.1016 / j.esmoop.2021.100096 https://www.annalsofoncology.org/article/S2059-7029(21)00053-3/fulltext
(2) AYA Working Group of ESMO and the European Society of Pediatric Oncology (SIOPE) https: /
(3) Barr R, Ries L, Trama A, Gatta G, Steliarova Foucher E, Stiller C, Bleyer A. A system for classifying cancers diagnosed in adolescents and young adults. https: /
Notes for editors
- – Although AYA is widely used to denote this population of patients, TYA (teens and young adults) is also used in some settings.
– Among the ‘young’ AYA group, blood cancers (mainly lymphomas and leukemia) and brain tumors are more common than in other age groups. However, as age increases, solid tumors become more common.
About the European Society of Medical Oncology (ESMO)
ESMO is a leading professional organization for medical oncology. With more than 25,000 members representing oncology professionals from over 160 countries around the world, ESMO is a reference society for oncology education and information. ESMO is committed to providing the best care for people with cancer, promoting integrated cancer protection, supporting oncologists in their professional development and advocating for sustainable cancer care around the world. https: /
About the European Society of Pediatric Oncology (SIOP Europe or SIOPE)
SIOP Europe is a unique, unified European organization of academia and health professionals dedicated to childhood and adolescent cancer, working in close partnership with groups of patients, parents and cancer survivors across Europe. Representing more than 2,000 professional members from 36 European countries, SIOPE addresses the main challenges facing the pediatric hemato-oncology community in Europe through a multidisciplinary perspective. https: /