Meet AIEOP’s Late Effects of Antiblastic Treatments Working Group  

Coordinator Monica Terenziani

Tell us a little bit about your background as Coordinator of the working group?
I am a pediatric oncologist and senior staff member in the Pediatric Oncology Unit at the Fondazione IRCCS Istituto Nazionale dei Tumori of Milan (Italy), which has been the first cancer center in Italy for preclinical and clinical research, assistance and training.
I am involved in patient care, translational and clinical research, including iatrogenic sequelae in long term survivors, and I am responsible for the Late Effects Clinic for Childhood Cancer Survivors and Fertility Preservation Pathway in the same institute, and Chair of the Italian AIEOP protocol for Pediatric Germ Cell Tumors.
I am is a Member of PanCare (Pan-European Network for Care of Survivors after Childhood and Adolescent Cancer), member of the Late Effects Study Group (LESG), and member of the International Guideline Harmonization Group with a focus on Metabolic Syndrome and Renal Surveillance.
Over the years, the growing interaction with many AIEOP and PanCare colleagues, translated into this topic being brought to the forefront my clinical and research interests. Thanks to the active involvement in the most intense professional network for late effects, my work has been benefiting from exchanging knowledge with the leading experts in this field around the world. In addition, I am part of European and International studies. I believe my technical role in late effects can enrich the projects, especially from the point of view of medical problems of childhood cancer survivors (CCS). 
What is the overall goal and in addition a specific current goal of the WG?
As the number of childhood cancer survivors increases each year, thanks to a 5-year survival approaching 80%, the impact of this on society in general and the health care system in particular will become more and more manifested. Among these, about 60% have at least one late adverse effect of treatment and 30% have a serious late effect. The increasing number of childhood cancer survivors, and their associated morbidity, make their medical and social needs a challenging issue. The need for knowledge obtained through both retrospective and prospective evaluation and research is paramount in order to provide necessary interventions, both primary and secondary, which will not only serve to increase the quality of life in this group, but also make best use of our health care systems resources. A structured strategy for survivors and the associated research are the goals of the working group. We should approach these goals on an internationally-based cooperation and with synergistic efforts given the limited resources.
What has been your WG’s greatest accomplishment?
Thanks to the great work of the previous coordinator of the working group, to the multidisciplinary collaboration of many experts, to the participation of almost all AIEOP centers, we were able to deliver the Survivorship Passport (a written summary of treatment received with a care plan for follow-up needed, based on the specific treatments received). In January 2019, a pilot project started in Italy at seven AIEOP centers, and from the end of 2021, all AIEOP centers in Italy could ask for and start to deliver this important tool. 
What message do you have to the international medical community?
As stakeholders in the field of Paediatric Oncology in Italy, we would like to define a validated and reproducible model for childhood cancer survivors, making sure that the necessary funds are available to infrastructures as they progress and evolve over time. To best help in a rare condition, many members of the present working group have collaborations over our borders. The knowledge for how to make this work overtime exists and it is improving; what is needed is the necessary funds to maintain this knowledge and to disseminate it across the country. A structured strategy for survivors  and the associated research, is the goal of the working group. Results will be reported in the scientific literature and at scientific meetings. 
In addition, we will prepare reports for sharing/comparing our organisation with the other countries, as well as for the general audience (survivors and their families, charities and supporters), and for the GPs through different medical associations. Partnership with parents, survivors and associations by dissemination and training is essential to achieve the goals of promoting and ensuring long-term care within the country: counselling, educating and empowering survivors; preparing “survivorship passport”; providing educational material for health care professionals; evaluating risks as well as benefits of proposals for future treatment protocols; advising national health authorities; identify low risk group for potential discharge from hospital follow-up; provide risk stratification information to Italian health authority to guide the evidence-based levels of intensity of clinical follow-up different group of survivors needs; provide health economic evaluations for these long-life follow up.