More work must be done to remove the care inequalities for adolescents and young adults (AYA) with cancer, experts have said.
A newly released position paper from the AYA working group of the European Society of Medical Oncology (ESMO) and the European Society for Paediatric Oncology (SIOPE) says many patients can miss out on age-appropriate specialist care because there is a lack of awareness of how their needs differ from children and older adults with cancer.
The paper recommends co-operation between a range of specialists involved in AYA cancer care, as well as services tailored to their needs and measures to ensure more patients in this age group are enrolled into clinical trials.
The joint ESMO/SIOPE working group aims to increase awareness among adult and paediatric haemato-oncology communities. The SIOPE co-chair of the joint working group, Dr Andrea Ferrari from Fondazione IRCCS Istituto Nazionale Tumori in Milan, is the lead author of the position paper.
Dr Ferrari said: “These 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.
“They 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,” added Dr Ferrari.
The ESMO/SIOPE position paper reveals the main challenges are 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.
“Educating oncologists on the characteristics of the diseases in this age group is a first step,” said Dr Ferrari.
“It 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.”
The working group has called for healthcare professionals from different disciplines, patient advocates and stakeholders to focus on the specific challenges of cancer. It suggests that centralisation of care into dedicated and financially well-supported specialist services and networks is needed to improve care and facilitate access to clinical trials of novel therapies for all eligible patients.
ESMO co-chair of the joint working group Emmanouil Saloustros, who works at the Department of Oncology in University Hospital of Larissa, Greece, added: “There is an under-provision and inequity of cancer care offered to this group of patients: 'speaking the same language' and fostering professional collaboration are really key to finding common ground and building something which is tailored to the unique needs of these patients.”
Ferrari A, Stark D, Peccatori FA, Fern L, Laurence V, Gaspar N, Bozovic-Spasojevic I, Smith O, De Munter J, Derwich K, Hjorth L, van der Graaf WTA, Soanes L, Jezdic S, Blondeel A, Bielack S, Douillard J-Y, Mountzios G & Saloustros E. (2021) “Adolescents and young adults (AYA) with cancer: a position paper from the AYA Working Group of the European Society for Medical Oncology (ESMO) and the European Society for Paediatric Oncology (SIOPE)”. ESMO Open, doi: 10.1016/j.esmoop.2021.100096
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