Where Are Adolescents with Soft Tissue Sarcomas Treated? An Italian Nationwide Study on Referrals Based on Hospital Discharge Records

Andrea Ferrari, Alice Bernasconi, Giovanna Sironi, Luca Bergamaschi, Laura Botta, Stefano Chiaravalli, Michela Casanova, Gianni Bisogno, Giuseppe Maria Milano, Maurizio Mascarin, Assunta Tornesello, Paola Quarello, Maura Massimino, Gemma Gatta, Annalisa Trama

Research output: Contribution to journalArticlepeer-review


Purpose: Adolescents (15-19 years) with soft tissue sarcomas (STS) have worse survival than children. One reason is the former's limited access to expert centers. We investigated where adolescents with STS are treated in Italy, analyzing hospital discharge records (HDRs) countrywide. Methods: We applied to the Health Ministry to obtain the HDRs of all adolescents hospitalized in 2002-2015. We excluded prevalent cases hospitalized with STS in 2002-2006 to obtain a cohort of incident cases 2007-2014. We defined main treatments observing 12 months from diagnosis. Thus, the cohorts end in 2014 rather than 2015. We computed "hospital volume" as the number of adolescents treated by a hospital in 8 years. Patient migration across geographical areas was investigated comparing patients' place of residence and of hospitalization. Results: We identified 381 adolescents with STS, 63% of them were treated at AIEOP (Associazione Italiana Ematologia Oncologia Pediatrica [Italian Association of Pediatric Hematology and Oncology]) centers. These patients were treated at 44 different AIEOP centers, with 1 center treating 62 adolescents (26% of all those treated by AIEOP centers). The remaining 142 adolescents with STS were treated at 66 non-AIEOP centers, one of which managed 17 adolescents. Centers in the north of Italy were more likely to attract patients from other regions. Conclusion: Although HDRs have some limitations, they are the only tool for investigating access to care in countries without national cancer registries. Our findings support the use of HDRs for such purposes, confirm the efficacy of the Italian pediatric oncology network, and make the case for closer collaboration between pediatric and adult oncologists.

Original languageEnglish
JournalJournal of Adolescent and Young Adult Oncology
Publication statusE-pub ahead of print - Oct 29 2019


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