Experts urge to remove care inequalities for adolescents and young adults (AYA) with cancer

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  • ESMO/SIOPE expert position paper raises awareness of need for age-appropriate specialist services to improve cancer outcomes
  • Unique tumour epidemiology, scarce awareness, difficult access to dedicated care and clinical trials, complex psychosocial aspects can impact negatively on disease outcome

Lugano, Switzerland; Brussels, Belgium, 8 April 2021 – Adolescents and young adults (AYA) with cancer are often missing out on age-appropriate specialist care owing to a lack of awareness of how their needs differ from those of children and older adults with cancer.

A newly released position paper from the AYA Working Group of ESMO and the European Society for Paediatric Oncology (SIOPE) defines a common vision for improving outcomes for AYAs with cancer in Europe. (1, 2) Its recommendations include cooperation between a diverse range of specialists involved in AYA care, development of services tailored to the needs of AYAs with cancer, and specific measures to get more patients in this age group into clinical trials.

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. (3)

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. “They told me that even at 21, I would be hospitalised in a paediatric oncology unit, because the only experts for my disease were there,” he says.

“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,” 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. “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,” he says.

“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,” says Emmanouil Saloustros, Department of Oncology, University Hospital of Larissa, Larissa, Greece, ESMO Co-Chair of the joint ESMO/SIOPE AYA Working Group.

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.

The ESMO/SIOPE AYA joint Working Group is committed to supporting both medical and paediatric oncologists by increasing awareness of AYA patients’ needs, encouraging the development of ad-hoc education and advocating for an increase in research capacities in tumour types. “Educating oncologists on the characteristics of the diseases in this age group is a first step,” says 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.”

“When I had to move to another city, I had to give up everything – 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,” says S.

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.

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.

S. says: “It 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.”

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ESMO and SIOPE 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.

ESMO Press Office: [email protected]

SIOP Europe Communications Office: [email protected]

References

(1) Ferrari A, Stark D, Peccatori FA et al. 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
https://www.annalsofoncology.org/article/S2059-7029(21)00053-3/fulltext

(2) AYA Working Group of ESMO and the European Society for Paediatric Oncology (SIOPE) https://www.esmo.org/about-esmo/organisational-structure/educational-committee/adolescents-and-young-adults-working-group

(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://doi.org/10.1002/cncr.33041

Notes to Editors

    – Although AYA is widely used to denote this patient population, TYA (teenagers and young adults) is also used in some settings.

    – Among the ‘young’ AYA group, blood cancers (mainly lymphomas and leukaemia) and brain tumours are more common than in other age groups. However, as age increases, solid tumours become more common.

About the European Society for Medical Oncology (ESMO)

ESMO is the leading professional organisation for medical oncology. With more than 25,000 members representing oncology professionals from over 160 countries worldwide, ESMO is the society of reference for oncology education and information. ESMO is committed to offer the best care to people with cancer, through fostering integrated cancer care, supporting oncologists in their professional development, and advocating for sustainable cancer care worldwide. https://www.esmo.org/

About the European Society for Paediatric Oncology (SIOP Europe or SIOPE)

SIOP Europe is the single, united European organisation of academia and healthcare professionals dedicated to childhood and teenage cancer, working in close partnership with patient, parent, and childhood cancer survivor groups across Europe.
Representing more than 2,000 professional members across 36 European countries, SIOPE addresses the main challenges faced by the paediatric haemato-oncology community in Europe through a multidisciplinary perspective. https://siope.eu/

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Related Journal Article

http://dx.doi.org/10.1016/j.esmoop.2021.100096

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