Dalla cura alla guarigione e al “diritto all’oblio oncologico”
Roberto Miniero* e Valentina Talarico**
*AIMAC- Già Università Magna Graecia di Catanzaro** Azienda Ospedaliero Universitaria “Renato Dulbecco”. UOC Pediatria Ospedaliera.
Pubblicato su Il Pediatra n.6-23, pagg. 56-62
Bibliografia
1. Miniero R.,Talarico V.,Mazza GA.,Galati MC. Oncologia. In Pediatria Pratica. Bona G. e Miniero R. Eds. Minerva Medica.2020.Torino. Pag.431-53 .
2. Weiner M. Epidemiology. In Pediatric Hematology & Oncology Weiner M, Yamashiro DJ, Satwani P., Bhatia M.,Neunert C(Eds) Elsevier 2024 Philadelphia.Pag.58-62.
3. ARTIUM. Disponibile su https://www.registri-tumori.it/cms/search/node/tumori%20pediatrici
4. Kattner P, Strobel H, Khoshnevis N. et al. Compare and contrast: pediatric cancer versus adult malignancies. Cancer Metastasis Rev. 2019;38(4):673-682.
5. Haupt R., Beccaria A., TalloneT. et al. La guarigione dopo tumore pediatrico: le raccomandazioni per uno screening a lungo termine delle possibili complicazioni legate ai trattamenti ricevuti. Prospettive in Pediatria.2021;51(204):250-64.
6. Peccatori N., Verna M., Biondi. Global Initiative for Childhood Cancer: una scommessa globale per la cura del bambino oncologico. Prospettive in Pediatria.2021;51(204):275-80.
7. AIEOP: Disponibile su https://www.aieop.org/web.
8. Jankovic M., Vallinoto C., Spinelli M.et al. La relazione terapeutica con il bambino e l’adolescente affetti da leucemia. Giornale Italiano di Medicina del Lavoro ed Ergonomia. Supplemento di Psicologia 2008; 30: B71-B76..
9. Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers. Version 5.0 October 2018. Disponibile su http://www.survivorshipguidelines.org/pdf/2018/COG_LTFU_Guidelines_v5.pdf
10. Boiardi A Disponibile su https://www.osservatoriodiritti.it/2022/04/06/lungo-sopravviventi-cancro/#La Tutela Dei Lungo Sopravviventi: Una Carta D’Identità Per I pazienti
11. Masera G..Tonucci F. Cari Genitori Hoepli 1998.Milano Pag.56,57
12. Lenat J., Levine J. Survivorship and Late effects in Pediatric Hematology & Oncology Weiner M, Yamashiro DJ, Satwani P., Bhatia M.,Neunert C(Eds) Elsevier 2024 Philadelphia.Pag 124-131
13. Bhakta N, Liu Q, Ness KK. Et al. The cumulative burden of surviving childhood cancer: an initial report from the St Jude Lifetime Cohort Study (SJLIFE). Lancet. 2017 ;390(10112):2569-82.
14. Jankovic M, Haupt R, Spinetta JJ. et al. participants in PanCare Long-term survivors of childhood cancer: cure and care-the Erice Statement (2006) revised after 10 years (2016). J Cancer Surviv. 2018;12(5):647-50.
15. Michel G, Mulder RL, van der Pal HJH et al. Evidence-based recommendations for the organization of long-term follow-up care for childhood and adolescent cancer survivors: a report from the PanCareSurFup Guidelines Working Group. J Cancer Surviv. 2019;13(5):759-72.
16. van Kalsbeek RJ, Mulder RL, Haupt R. et al. The PanCareFollowUp Care Intervention: A European harmonised approach to person-centred guideline-based survivorship care after childhood, adolescent and young adult cancer. Eur J Cancer. 2022 ;162:34-44.
17. Mulder RL, Font-Gonzalez A, Hudson MM. et al. PanCareLIFE Consortium. Fertility preservation for female patients with childhood, adolescent, and young adult cancer: recommendations from the PanCareLIFE Consortium and the International Late Effects of Childhood Cancer Guideline Harmonization Group. Lancet Oncol. 2021;22(2):e45-e56.
18. Hudson MM, Bhatia S, Casillas J. et al. Follow-up Care for Childhood, Adolescent, and Young Adult Cancer Survivors. Pediatrics. 2021 ;148(3):e2021053127.
19. Jin Z, Griffith MA, Rosenthal AC. Identifying and Meeting the Needs of Adolescents and Young Adults with Cancer. Curr Oncol Rep. 2021;23(2):17.
20. Otth M, Denzler S, Koenig C. et al. Transition from pediatric to adult follow-up care in childhood cancer survivors-a systematic review. J Cancer Surviv. 2021;15(1):151-62.
21. Marchak JG, Sadak KT, Effinger KE. Et al. Transition practices for survivors of childhood cancer: a report from the Children’s Oncology Group. J Cancer Surviv. 2023 ;17(2):342-50.
22. Mukherjee SD, Bainbridge D, Hillis C. et al. Optimizing Cancer Survivorship Care: Examination of Factors Associated with Transition to Primary Care. Curr Oncol. 2023;30(3):2743-50.
23. Trapani JA, Murdaugh DL. Processing efficiency in pediatric cancer survivors: A review and operationalization for outcomes research and clinical utility. Brain Behav. 2022; 12(12):e2809.
24. Haupt R, Spinetta JJ, Ban I. et al, International Berlin-Frankfurt-Münster Study Group Early and Late Toxicity Educational Committee (I-BFM-SG ELTEC). Long term survivors of childhood cancer: cure and care. The Erice statement. Eur J Cancer. 2007;43(12):1778-80.
25. Chronaki C, Charalambous E, Cangioli G. et al. Factors Influencing Implementation of the Survivorship Passport: The IT Perspective. Stud Health Technol Inform. 2022;293:161-68.
26. Quarello P, Toss A, Mascarin M. et al. Get up, stand up: Alongside adolescents and young adults with cancer for their right to be forgotten. Tumori. 2022;108(5):402-06.
27. Iannelli E. I diritti del malato di cancro. XIV Edizione. AIMAC.2023.Roma
28. Scocca G, Meunier F. Towards an EU legislation on the right to be forgotten to access to financial services for cancer survivors. Eur J Cancer. 2022;162:133-37.
29. Brinkman TM, Recklitis CJ, Michel G. et al. Psychological Symptoms, Social Outcomes, Socioeconomic Attainment, and Health Behaviors Among Survivors of Childhood Cancer: Current State of the Literature. J Clin Oncol. 2018;36(21):2190-97.
30. Ahomäki R, Harila-Saari A, Parkkola K. et al. Compulsory military service as a measure of later physical and cognitive performance in male survivors of childhood cancer. Acta Oncol. 2017;56(12):1712-19.
31. Del Frate C. Oblìo oncologico, Schillaci: «Presto la legge». Che cos’è e dove esiste già. Disponibile su https://www.corriere.it/salute/23_maggio_24/oblio-oncologico-schillaci-presto-legge-che-cos-e-dove-esiste-gia-f51380ca-fa0d-11ed-a2b9-074b62135bb4.shtml
32. Disponibile su http://camera.it
