Alice Bernasconi1, Giulio Barigelletti2, Andrea Tittarelli2, Laura Botta1, Gemma Gatta1, Giovanna Tagliabue2, Paolo Contiero3, Stefano Guzzinati4, Anita Andreano5, Gianfranco Manneschi6, Fabio Falcini7, Marine Castaing8, Rosa Angela Filiberti9, Cinzia Gasparotti10, Claudia Cirilli11, Walter Mazzucco12, Lucia Mangone13, Silvia Iacovacci14, Maria Francesca Vitale15, Fabrizio Stracci16, Silvano Piffer17, Rosario Tumino18, Simona Carone19, Giuseppe Sampietro20, Anna Melcarne21, Paola Ballotari22, Lorenza Boschetti23, Salvatore Pisani24, Luca Cavalieri D'Oro25, Francesco Cuccaro26, Angelo D'Argenzio27, Giancarlo D'Orsi28, Anna Clara Fanetti29, Antonino Ardizzone30, Giuseppa Candela31, Fabio Savoia32, Cristiana Pascucci33, Maurizio Castelli34, Cinzia Storchi13, Annalisa Trama1. 1. Department of Research, Evaluative Epidemiology Unit, Fondazione IRCCS Istituto Nazionale dei Tumori di Milano, Milano, Italy. 2. Department of Research, Cancer Registry Unit, Fondazione IRCCS Istituto Nazionale dei Tumori di Milano, Milano, Italy. 3. Department of Research, Environmental Epidemiology Unit, Fondazione IRCCS Istituto Nazionale dei Tumori di Milano, Milano, Italy. 4. Veneto Tumor Registry, Azienda Zero, Padova, Italy. 5. Epidemiology Unit, Agency for Health Protection (ATS) of Milan, Milan, Italy. 6. Clinical Epidemiology Unit, Istituto per lo Studio, la Prevenzione e la Rete Oncologica (ISPRO), Firenze, Italy. 7. Department of Clinical and Experimental Oncology and Ematology, Istituto Scientifico Romagnolo per lo Studio e la Cura dei Tumori (IRST) IRCCS, Meldola, Italy. 8. Integrated Cancer Registry of Catania-Messina-Siracusa-Enna, Department of Hygiene and Public Health, Università di Catania, Catania, Italy. 9. Liguria Cancer Registry, IRCCS Ospedale Policlinico San Martino, Genova, Italy. 10. Epidemiology Unit, ATS Brescia, Brescia, Italy. 11. Modena Cancer Registry, AUSL Modena, Modena, Italy. 12. Department of Medicine and Surgery, Università degli Studi di Palermo, Palermo, Italy. 13. Epidemiology Unit, Azienda Unità Sanitaria Locale-IRCCS di Reggio Emilia, Reggio Emilia, Italy. 14. Active Prevention Unit, ASL Latina, Latina, Italy. 15. Napoli 3 Sud Cancer Registry, Brusciano, Italy. 16. Department of Experimental Medicine, Università degli studi di Perugia, Perugia, Italy. 17. Evaluative and Clinical Epidemiological Service, Azienda provinciale per i servizi sanitari Trento, Italy. 18. Cancer Registry and Histopathology Unit, ASP Ragusa, Ragusa, Italy. 19. Taranto Cancer Registry, ASL Taranto, Taranto, Italy. 20. Epidemiological Service, ATS Bergamo, Bergamo, Italy. 21. Cancer Registry Epidemiology Unit, ASL Lecce, Lecce, Italy. 22. Epidemiologic Observatory, ATS Val Padana, Mantova, Italy. 23. Epidemiologic Observatory, Cancer Registry, ATS di Pavia, Pavia, Italy. 24. Epidemiology Unit, ATS dell'Insubria, Varese, Italy. 25. Epidemiology Unit, Agenzia per la Tutela della Salute della Brianza, Monza, Italy. 26. Epidemiology Unit, Cancer Registry, ASL BAT, Barletta, Italy. 27. Epidemiology Unit, ASL Caserta 2, Caserta, Italy. 28. Department of Prevention, ASL Napoli 2, Napoli, Italy. 29. Epidemiology Unit, ATS Montagna, Sondrio, Italy. 30. Statistic and Epidemiology Unit, Cancer Registry, ASL Brindisi, Brindisi, Italy. 31. Cancer Registry Unit, ASP Trapani, Trapani, Italy. 32. Childhood Cancer Registry of Campania Region, AORN Santobono Pausilipon, Napoli, Italy. 33. Department of Experimental Medicine and Public Health, Università di Camerino, Camerino, Italy. 34. Prevention Unit, Azienda USL della Valle d'Aosta, Aosta, Italy.
Abstract
Purpose: Adolescent and young adult (AYA, 15-39 years) cancer survivors (alive at least 5 years after cancer diagnosis) are less studied than younger and older cancer survivors and research on their late effects is limited. To facilitate research on long-term outcomes of AYA cancer survivors, we established, in Italy, a population-based AYA cancer survivors' cohort. This article describes the study design and main characteristics of this cohort. Methods: The cohort derives from population-based cancer registries (CRs). Each CR identified AYA cancer patients retrospectively. Treatment for first primary cancer and all health events from diagnosis to death can be traced through linkage with available health databases, such as hospital discharge records (HDRs), mortality files, and outpatient and pharmaceutical databases. Results: Thirty-four CRs participated to the cohort which overall includes 93,291 AYAs with cancer and 67,692 cancer survivors. First primary cancer distribution in AYA cancer survivors differs by sex and age groups because of the different cancer types diagnosed in AYAs. Almost 78% of AYA cancer survivors have HDRs and 14.8% also pharmaceutical and outpatient databases. Conclusion: This cohort will be used to study, for the first time in Italy, the pattern and excess risk of late effects in AYA cancer survivors. HDRs, outpatient and pharmaceutical databases will be used to define primary treatment to assess its impact on AYA cancer survivors' late effects. This cohort exploiting data sources already available at CRs, minimize the data collection effort and it will contribute to assess the feasibility of using administrative database to study cancer survivors' late effects.
Purpose: Adolescent and young adult (AYA, 15-39 years) cancer survivors (alive at least 5 years after cancer diagnosis) are less studied than younger and older cancer survivors and research on their late effects is limited. To facilitate research on long-term outcomes of AYA cancer survivors, we established, in Italy, a population-based AYA cancer survivors' cohort. This article describes the study design and main characteristics of this cohort. Methods: The cohort derives from population-based cancer registries (CRs). Each CR identified AYA cancerpatients retrospectively. Treatment for first primary cancer and all health events from diagnosis to death can be traced through linkage with available health databases, such as hospital discharge records (HDRs), mortality files, and outpatient and pharmaceutical databases. Results: Thirty-four CRs participated to the cohort which overall includes 93,291 AYAs with cancer and 67,692 cancer survivors. First primary cancer distribution in AYA cancer survivors differs by sex and age groups because of the different cancer types diagnosed in AYAs. Almost 78% of AYA cancer survivors have HDRs and 14.8% also pharmaceutical and outpatient databases. Conclusion: This cohort will be used to study, for the first time in Italy, the pattern and excess risk of late effects in AYA cancer survivors. HDRs, outpatient and pharmaceutical databases will be used to define primary treatment to assess its impact on AYA cancer survivors' late effects. This cohort exploiting data sources already available at CRs, minimize the data collection effort and it will contribute to assess the feasibility of using administrative database to study cancer survivors' late effects.
Entities:
Keywords:
cohort; late outcomes; population-based data; survivors