Measuring the efficacy of a project for adolescents and young adults with cancer: A study from the Milan Youth Project

Andrea Ferrari, Matteo Silva, Laura Veneroni, Chiara Magni, Carlo Alfredo Clerici, Cristina Meazza, Monica Terenziani, Filippo Spreafico, Stefano Chiaravalli, Michela Casanova, Roberto Luksch, Serena Catania, Elisabetta Schiavello, Veronica Biassoni, Marta Podda, Luca Bergamaschi, Nadia Puma, Alice Indini, Tullio Proserpio, Maura Massimino

Research output: Contribution to journalArticle

Abstract

Background: 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. Methods: 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. Results: 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. Conclusions: 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.

Original languageEnglish
Pages (from-to)2197-2204
Number of pages8
JournalPediatric Blood and Cancer
Volume63
Issue number12
DOIs
Publication statusPublished - Dec 1 2016

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Young Adult
Neoplasms
Fertility Preservation
Aptitude
Standard of Care
Observational Studies
Outcome Assessment (Health Care)
Clinical Trials
Prospective Studies
Pediatrics
Psychology

Keywords

  • adolescents
  • cancer
  • efficacy
  • metrics
  • project
  • sustainability
  • young adults

ASJC Scopus subject areas

  • Pediatrics, Perinatology, and Child Health
  • Hematology
  • Oncology

Cite this

Measuring the efficacy of a project for adolescents and young adults with cancer : A study from the Milan Youth Project. / Ferrari, Andrea; Silva, Matteo; Veneroni, Laura; Magni, Chiara; Clerici, Carlo Alfredo; Meazza, Cristina; Terenziani, Monica; Spreafico, Filippo; Chiaravalli, Stefano; Casanova, Michela; Luksch, Roberto; Catania, Serena; Schiavello, Elisabetta; Biassoni, Veronica; Podda, Marta; Bergamaschi, Luca; Puma, Nadia; Indini, Alice; Proserpio, Tullio; Massimino, Maura.

In: Pediatric Blood and Cancer, Vol. 63, No. 12, 01.12.2016, p. 2197-2204.

Research output: Contribution to journalArticle

Ferrari, A, Silva, M, Veneroni, L, Magni, C, Clerici, CA, Meazza, C, Terenziani, M, Spreafico, F, Chiaravalli, S, Casanova, M, Luksch, R, Catania, S, Schiavello, E, Biassoni, V, Podda, M, Bergamaschi, L, Puma, N, Indini, A, Proserpio, T & Massimino, M 2016, 'Measuring the efficacy of a project for adolescents and young adults with cancer: A study from the Milan Youth Project', Pediatric Blood and Cancer, vol. 63, no. 12, pp. 2197-2204. https://doi.org/10.1002/pbc.26172
Ferrari, Andrea ; Silva, Matteo ; Veneroni, Laura ; Magni, Chiara ; Clerici, Carlo Alfredo ; Meazza, Cristina ; Terenziani, Monica ; Spreafico, Filippo ; Chiaravalli, Stefano ; Casanova, Michela ; Luksch, Roberto ; Catania, Serena ; Schiavello, Elisabetta ; Biassoni, Veronica ; Podda, Marta ; Bergamaschi, Luca ; Puma, Nadia ; Indini, Alice ; Proserpio, Tullio ; Massimino, Maura. / Measuring the efficacy of a project for adolescents and young adults with cancer : A study from the Milan Youth Project. In: Pediatric Blood and Cancer. 2016 ; Vol. 63, No. 12. pp. 2197-2204.
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AU - Ferrari, Andrea

AU - Silva, Matteo

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AU - Magni, Chiara

AU - Clerici, Carlo Alfredo

AU - Meazza, Cristina

AU - Terenziani, Monica

AU - Spreafico, Filippo

AU - Chiaravalli, Stefano

AU - Casanova, Michela

AU - Luksch, Roberto

AU - Catania, Serena

AU - Schiavello, Elisabetta

AU - Biassoni, Veronica

AU - Podda, Marta

AU - Bergamaschi, Luca

AU - Puma, Nadia

AU - Indini, Alice

AU - Proserpio, Tullio

AU - Massimino, Maura

PY - 2016/12/1

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N2 - Background: 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. Methods: 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. Results: 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. Conclusions: 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.

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