title: Measuring the efficacy of a project for adolescents and young adults with cancer: A study from the Milan Youth Project.
abstract: Various projects dedicated specifically to adolescents and young adults (AYA) with cancer have been developed in recent years. A critical aspect of such programs is the ability to demonstrate its value, and therefore how to measure desired outcomes.
  
  
  
  A list of metrics to consider for demonstrating the advantages of an AYA program was identified and used to assess the activity of the Youth Project operating at the Pediatric Oncology Unit of the Istituto Nazionale Tumori in Milan.
  
  
  
  The number of newly diagnosed AYA patients seen at the Unit has increased since the formal launch of the Youth Project, from 65 to 81.2 cases/year. Concerning the 78 AYA patients presenting with malignant neoplasms in 2015, 82% were included in clinical trials (the other 18% in prospective observational studies). Fertility preservation measures were implemented for 59% of AYA patients considered at risk, and specific psychological support was provided in 70.6% of cases; 72.5% of patients actively participated in support activities. Other parameters considered were a preliminary satisfaction questionnaire administered to patients and the program's scientific recognition and acknowledgment by the community.
  
  
  
  The study proposed a number of potentially reproducible, practical parameters to consider in assessing the value of a program dedicated to AYA. These metrics were examined in terms of the activities of our Youth Project, and confirmed its efficacy. To be sustainable over time, AYA projects have to be accepted as a standard of care at the community and government levels.
authors.affiliation: Pediatric Oncology Unit, Fondazione IRCCS Istituto Nazionale Tumori, Milano, Lombardia, Italy. andrea.ferrari@istitutotumori.mi.it.
authors.forename: Andrea
authors.initials: A
authors.lastname: Ferrari
authors.affiliation: Pediatric Oncology Unit, Fondazione IRCCS Istituto Nazionale Tumori, Milano, Lombardia, Italy.
authors.forename: Matteo
authors.initials: M
authors.lastname: Silva
authors.affiliation: Pediatric Oncology Unit, Fondazione IRCCS Istituto Nazionale Tumori, Milano, Lombardia, Italy.
authors.forename: Laura
authors.initials: L
authors.lastname: Veneroni
authors.affiliation: Pediatric Oncology Unit, Fondazione IRCCS Istituto Nazionale Tumori, Milano, Lombardia, Italy.
authors.forename: Chiara
authors.initials: C
authors.lastname: Magni
authors.affiliation: Clinical Biology, Oncology and Hemato-Oncology Department, Fondazione IRCCS Istituto Nazionale Tumori, Milano, Lombardia, Italy.
authors.forename: Carlo Alfredo
authors.initials: CA
authors.lastname: Clerici
authors.affiliation: Pediatric Oncology Unit, Fondazione IRCCS Istituto Nazionale Tumori, Milano, Lombardia, Italy.
authors.forename: Cristina
authors.initials: C
authors.lastname: Meazza
authors.affiliation: Pediatric Oncology Unit, Fondazione IRCCS Istituto Nazionale Tumori, Milano, Lombardia, Italy.
authors.forename: Monica
authors.initials: M
authors.lastname: Terenziani
authors.affiliation: Pediatric Oncology Unit, Fondazione IRCCS Istituto Nazionale Tumori, Milano, Lombardia, Italy.
authors.forename: Filippo
authors.initials: F
authors.lastname: Spreafico
authors.affiliation: Pediatric Oncology Unit, Fondazione IRCCS Istituto Nazionale Tumori, Milano, Lombardia, Italy.
authors.forename: Stefano
authors.initials: S
authors.lastname: Chiaravalli
authors.affiliation: Pediatric Oncology Unit, Fondazione IRCCS Istituto Nazionale Tumori, Milano, Lombardia, Italy.
authors.forename: Michela
authors.initials: M
authors.lastname: Casanova
authors.affiliation: Pediatric Oncology Unit, Fondazione IRCCS Istituto Nazionale Tumori, Milano, Lombardia, Italy.
authors.forename: Roberto
authors.initials: R
authors.lastname: Luksch
authors.affiliation: Pediatric Oncology Unit, Fondazione IRCCS Istituto Nazionale Tumori, Milano, Lombardia, Italy.
authors.forename: Serena
authors.initials: S
authors.lastname: Catania
authors.affiliation: Pediatric Oncology Unit, Fondazione IRCCS Istituto Nazionale Tumori, Milano, Lombardia, Italy.
authors.forename: Elisabetta
authors.initials: E
authors.lastname: Schiavello
authors.affiliation: Pediatric Oncology Unit, Fondazione IRCCS Istituto Nazionale Tumori, Milano, Lombardia, Italy.
authors.forename: Veronica
authors.initials: V
authors.lastname: Biassoni
authors.affiliation: Pediatric Oncology Unit, Fondazione IRCCS Istituto Nazionale Tumori, Milano, Lombardia, Italy.
authors.forename: Marta
authors.initials: M
authors.lastname: Podda
authors.affiliation: Pediatric Oncology Unit, Fondazione IRCCS Istituto Nazionale Tumori, Milano, Lombardia, Italy.
authors.forename: Luca
authors.initials: L
authors.lastname: Bergamaschi
authors.affiliation: Pediatric Oncology Unit, Fondazione IRCCS Istituto Nazionale Tumori, Milano, Lombardia, Italy.
authors.forename: Nadia
authors.initials: N
authors.lastname: Puma
authors.affiliation: Pediatric Oncology Unit, Fondazione IRCCS Istituto Nazionale Tumori, Milano, Lombardia, Italy.
authors.forename: Alice
authors.initials: A
authors.lastname: Indini
authors.affiliation: Pediatric Oncology Unit, Fondazione IRCCS Istituto Nazionale Tumori, Milano, Lombardia, Italy.
authors.forename: Tullio
authors.initials: T
authors.lastname: Proserpio
authors.affiliation: Pediatric Oncology Unit, Fondazione IRCCS Istituto Nazionale Tumori, Milano, Lombardia, Italy.
authors.forename: Maura
authors.initials: M
authors.lastname: Massimino
mesh_terms: D000293:Adolescent; D000328:Adult; D005260:Female; D006801:Humans; D008297:Male; D009369:Neoplasms / Q000628:therapy*; D012944:Social Support; D059039:Standard of Care; D055815:Young Adult
keywords: adolescents; cancer; efficacy; metrics; project; sustainability; young adults