Evolving Services for Adolescents with Cancer in Italy: Access to Pediatric Oncology Centers and Dedicated Projects

Abstract

Purpose: To describe how the provision of services for adolescents with cancer has evolved in Italy, the study evaluated access to pediatric oncology centers affiliated to the national cooperative group Associazione Italiana Ematologia Oncologia Pediatrica (AIEOP), and the development of dedicated local projects. Methods: We calculated the observed/expected (O/E) ratio of adolescent patients (15-19 years old) admitted to AIEOP centers during the years 2013-2017. Observed cases were obtained from the AIEOP database (model 1.01). Expected cases were calculated on the incidence rates derived from the population-based registries. In addition, a questionnaire investigated the presence of any formal upper age limits for admitting patients, and to the development of local projects. Results: In the years 2013-2017, 9534 cases of cancer were registered in the AIEOP database, that is, 8031 children (0-14 years) and 1503 adolescents (15-19 years). The overall O/E ratio was 0.81, that is, 1.06 for children, and 0.37 for adolescents, and differed according the different tumor types. Concerning the questionnaire, 26% of centers reported age limits <18 years. Nineteen centers reported to have local projects dedicated to adolescents. Conclusions: The study shows an improvement in the services for adolescents in Italy, with an increase percentage of cases treated at AIEOP centers (from 10% of previous study, to 37%), the decrease of centers with admission age limits <18 years (from 44% 10 years ago, to 26%), and the development of many specific local projects. Effective cooperation with adult oncology societies and government recognition remain goals to be achieved.

Comparison of Hodgkin’s Lymphoma in Children and Adolescents. A Twenty Year Experience with MH’96 and LH2004 AIEOP (Italian Association of Pediatric Hematology and Oncology) Protocols

“…Over the 20 years, adolescent enrollment in AIEOP centers progressively grew from 16.1% of MH’96 patients to 32.9% of LH2004 patients ( p = 0.000). This reflected a similar increase reported in AYAs with lymphoma and other cancers treated with AIEOP protocols in Italy in the same time span [ 14 , 15 , 16 ]. This trend was also seen in North America, with 16–21 AYAs: from 28% in POG-9426 between 1996 and 2005, to 38% in COG-AHOD0431 between 2006 and 2009 [ 17 ].…”

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)

“…Clearly a multifaceted strategy is required to improve AYA recruitment into clinical trials, with substantial modification of the traditional approaches to drug development, regulation, protocol development and care environments. [42][43][44][45][46][47][48][49][50][51] These processes will themselves benefit from greater specialisation and interdisciplinary cooperation. The main challenges of access to clinical trials are summarised in Table 3.…”

Childhood cancer in Italy: background, goals, and achievements of the Italian Paediatric Hematology Oncology Association (AIEOP)

“…One such recent study, referring to 2013–2017, and to 9534 cases registered in the AIEOP database (8031 patients aged 0–14 and 1503 aged 15–19 years), reported an observed/expected (O/E) ratio of 0.81, but it was 1.06 for children and just 0.37 for adolescents (as well as differing significantly by type of tumor). 14 In other words, this study showed that practically all children with cancer in Italy were treated at AIEOP centers, but the same could not be said of the older adolescents. Such an evident gap in access to care, and to clinical trials for adolescents with cancer, is an internationally recognized challenge.…”

“…15,16 Some progress has been made, however: the percentage of adolescents treated at AIEOP centers has increased over the years, with the corresponding O/E ratio rising from 10% in 1989–2006 17 to 28% in 2007–2012, 18 and to 37% in 2013–2017. 14…”