A 21-year-old boy has trunk rhabdomyosarcoma, a rare tumor typical of children. To receive the correct diagnosis and appropriate treatment, not only did he have to move to a specialized center, but he was admitted to the pediatric oncology ward, because doctors who are experts in his type of disease are only there. A 15-year-old girl has melanoma, but is not eligible for a clinical trial because the minimum entry age is 18. These are two of the many examples of what it means to be an ‘Aya’. Three letters that identify a very particular ‘category’ of cancer patients: adolescents and young adults (from the English Adolescents and Young Adults), to which Aya Awareness Week is dedicated this week.
A middle ground
In Europe, ‘Aya’ patients are about 150,000 and represent 7% of cancer cases. Relatively low numbers, which have made it difficult in recent years to dedicate resources and ad hoc structures. Consequence? Lack of clinical trials for more targeted treatments, poor involvement in trials and often inadequate protocols that can lead on the one hand to high mortality, on the other to excessive treatments. In short: progress for these young patients has been few and slow. This was told by Andrea Ferrari, Head of the Youth Project of the Cancer Institute of Milan (INT) and of the national committee of the Aieop (Italian Association of Hematology and Oncology
pediatrica) on adolescents in an interview a few months ago.
Because cancer affects more and more young people
by Tiziana Moriconi, Tina Simoniello
In Europe, however, they have been working for some time to change things and today they are coming the recommendations published on Esmo Open dell’AYA Working Group, the group coordinated by Ferrari and born in 2015 from the collaboration between the European Society of Medical Oncology (Esmo) and the European Society of Pediatric Oncology (Siope). There are two main points of the recommendations: cooperation between different specialists to develop tailor-made services capable of responding to the needs of these patients, and greater involvement in clinical trials.
What changes, in substance? “That the collaboration between pediatric oncology and adult oncology has been formalized and becomes a reality”, replies Ferrari: “The position paper is the result of the joint effort of two different worlds, which are not always used to talking to each other. And it is a pragmatic tool that sets standards, with the aim of eliminating the logistical and bureaucratic barriers that often prevent young adults from accessing adequate care ”. Also at the Italian level we are moving on the same tracks, thanks to the new collaboration between Aiom (the Italian Association of Medical Oncology) and Aieop (Italian Association of Pediatric Hematology and Oncology), which has led to the creation of an inter-company group.
The requirements of the centers and clinical trials
The European recommendations – in which Fedro Peccatori, a doctor expert in fertility preservation at the European Oncology Institute in Milan, also collaborated – define the essential requirements that a cancer center must possess in order to care for young adults. A few examples: the simultaneous presence (or at least on call) of pediatric and adult specialists in multidisciplinary oncology teams, because in Aya patients typical tumors of children or adults can occur and it makes no sense that it is only age that determines the treatment; a fertility preservation service; the presence of spaces dedicated to young people; specialized psychological support for this age group; flexibility in the age limits of patients for treatments, participation in clinical trials dedicated to aya patients.
The recommendations also apply to clinical trials: “The data show us that while the number of children and adults enrolled in clinical trials is high, young adults are difficult to include and this has been identified as one of the factors affecting lower survival. of these patients ”, concludes Ferrari:“ There are therefore regulatory paths and rules to change ”.