Adolescent and young adult cancer survivors may experience various forms of social difficulties years or even decades after completing their cancer treatments. This article will hopefully help the Italian national project dedicated to adolescents and young adults with cancer promoting political and legal solutions to stop discrimination and supporting the right to be forgotten.
TramaABottaLSteliarova-FoucherE.Cancer burden in adolescents and young adults: a review of epidemiological evidence. Cancer J2018; 24: 256-266.
2.
TossAQuarelloPMascarinM, et al. Cancer predisposition genes in adolescents and young adults (AYAs): a review paper from the Italian AYA Working Group. Curr Oncol Rep. Epub ahead of print 23 March 2022. DOI: 10.1007/s11912-022-01213-3.
3.
AbramsANHazenEPPensonRT.Psychosocial issues in adolescents with cancer. Cancer Treat Rev2007; 33: 622-630.
4.
FerrariABleyerA.Participation of adolescents with cancer in clinical trials. Cancer Treat Rev2007; 33: 603-608.
5.
FernLALewandowskiJACoxonKM, et al. Available, accessible, aware, appropriate, and acceptable: a strategy to improve participation of teenagers and young adults in cancer trials. Lancet Oncol2014; 15: e341-350.
6.
TaylorRMFernLABarberJ, et al. Longitudinal cohort study of the impact of specialist cancer services for teenagers and young adults on quality of life: outcomes from the BRIGHTLIGHT study. BMJ Open2020; 10: e038471.
7.
BarrRDFerrariARiesL, et al. Cancer in adolescents and young adults: a narrative review of the current status and a view of the future. JAMA Pediatr2016; 170: 495-501.
8.
AubinS. What should the age range be for AYA oncology?J Adolesc Young Adult Oncol2011; 1: 3-10.
9.
FerrariAStarkDPeccatoriFA, et al. 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). ESMO Open2021; 6: 100096.
10.
FerrariAThomasDFranklinAR, et al. Starting an adolescent and young adult program: some success stories and some obstacles to overcome. J Clin Oncol2010; 28: 4850-4857.
11.
FerrariABarrRD.International evolution in AYA oncology: current status and future expectations. Pediatr Blood Cancer2017; 64: e26528.
12.
FerrariAQuarelloPMascarinM, et al. Italian pediatric and adult oncology communities join forces for a national project dedicated to adolescents and young adults with cancer. Tumori2022; 108: 104-110.
13.
Dal MasoLPanatoCTavillaA, et al., EUROCARE-5 Working Group. Cancer cure for 32 cancer types: results from the EUROCARE-5 study. Int J Epidemiol2020; 49: 1517e25.
14.
HjorthLHauptRSkinnerR, et al. Survivorship after childhood cancer: PanCare: a European Network to promote optimal long-term care. Eur J Cancer2015; 51: 1203-1211.
15.
GattaGBottaLRossiS, et al. Childhood cancer survival in Europe 1999–2007: results of EUROCARE-5—a population-based study. Lancet Oncol2014; 15: 35-47.
16.
FrancisciSGuzzinatiSDal MasoL, et al. An estimate of the number of people in Italy living after a childhood cancer. Int J Cancer2017; 140: 2444-2450.
17.
GeenenMMCardous-UbbinkMCKremerLC, et al. Medical assessment of adverse health outcomes in long-term survivors of childhood cancer. JAMA2007; 297: 2705-2715.
18.
BhaktaNLiuQNessKK, et al. The cumulative burden of surviving childhood cancer: an initial report from the St Jude Lifetime Cohort Study (SJLIFE). Lancet2017; 390: 2569-2582.
19.
ArmstrongGTLiuQYasuiY, et al. Long-term outcomes among adult survivors of childhood central nervous system malignancies in the Childhood Cancer Survivor Study. J Natl Cancer Inst2009; 101: 946–958.
20.
ArmenianSHXuLCannavaleKL, et al. Cause-specific mortality in survivors of adolescent and young adult cancer. Cancer2020; 126: 2305–2316.
21.
AndersonCLundJLWeaverMA, et al. Noncancer mortality among adolescents and young adults with cancer. Cancer2019; 125: 2107–2014.
22.
PivettaEMauleMMPisaniP, et al. Marriage and parenthood among childhood cancer survivors: a report from the Italian AIEOP Off-Therapy Registry. Haematologica2011; 96: 744-751.
23.
BrinkmanTMRecklitisCJMichelG, et al. Psychological symptoms, social outcomes, socioeconomic attainment, and health behaviors among survivors of childhood cancer: current state of the literature. J Clin Oncol2018; 36: 2190–2197.
24.
MassartM.A long term survivor’s perspective on supportive policy for a better access to insurance, loan and mortgage. J Cancer Policy2018; 15: 70-71.
25.
DumasAAllodjiRFresneauB, et al. The right to be forgotten: a change in access to insurance and loans after childhood cancer?J Cancer Surviv2017; 11: 431-437.
26.
FerrariAQuarelloPMascarinM, et al. Evolving services for adolescents with cancer in Italy: access to pediatric oncology centers and dedicated projects. J Adolesc Young Adult Oncol2020; 9: 196–201.
27.
MascarinMTruccoloIBytherE, et al. Cancer, adolescence, and their peers: ‘They’ll give you a story’. J Cancer Educ2014; 29: 434–440.
28.
FerrariAVeneroniLClericiCA, et al. Clouds of oxygen: adolescents with cancer tell their story in music. J Clin Oncol2015; 33: 218-221.
29.
FerrariAGaggiottiPSilvaM, et al. Searching for happiness. J Clin Oncol2017; 35: 2209-2212.
30.
FerrariASilvaMFacchettiG, et al. The podcast ‘Based on a true story’: a journey into the world of young cancer patients. Tumori. Epub ahead of print 28November2021. DOI: 10.1177/03008916211062641.
31.
MascarinMMilanoGMBertolottiM, et al. Discussing communication issues and needs with adolescents suffering from cancer. Tumori2021; 107: 360–363.
32.
ClericiCAQuarelloPBergadanoA, et al. Proper use of social media by health operators in the pediatric onco-hematological setting: consensus statement from the Italian Pediatric Hematology and Oncology Association (AIEOP). Pediatr Blood Cancer2018; 65: e26958.
33.
ScoccaGMeunierF.Towards an EU legislation on the right to be forgotten to access to financial services for cancer survivors. Eur J Cancer2022; 162: 133-137.
34.
Council of Europe Parliamentary Assembly. Discrimination against persons dealing with chronic and long-term illnesses, Resolution 2373, https://pace.coe.int/en/files/29183/html (2021, accessed 9 April 2022).
