Improving Outcomes for Teenagers and Young Adults (TYA) with Cancer

Abstract

The management of TYA with cancer is characterized by biological features in comparison to children. Therefore specialized treatment units have been established within professional structures of care for this group, and a European multidisciplinary framework for the treatment of TYA with cancer was founded.

Objectives are to promote interdisciplinary collaboration and provide strategic concepts to improve patient care centered to the special needs of this age group. Access to clinical trials for all TYA in the EU will be improved and research initiated, examining biology, epidemiology and health services.

Special goals of the interprofessional cooperation are:

• Improvement in survival and the quality of survival, where TYA are disadvantaged by existing structures of care.

• Provision of all the required expertise in ­dedicated and effective multiprofessional teams, sometimes across traditional healthcare boundaries.

• Provision of an environment for care that meets the specific needs of TYA.

Different measurements are discussed improving outcomes for TYA is proceeding at different speeds in different parts of the world. In some there are established teams, bringing together paediatric and adult specialists from many healthcare professions, reviewing and contributing to the optimal care of all TYA with cancer as part of national health policy.

Zusammenfassung

Krebserkrankungen bei TYA zeichnen sich durch biologische Besonderheiten aus. Deshalb sind interdisziplinäre Behandlungsgruppen speziell für die Patienten dieser Altersgruppe geschaffen worden, die sich international zu einer Arbeitsgruppe zusammengeschlossen haben.

Allgemeine Ziele der TYA sind, die Besonderheiten der Krebserkrankungen in dieser Altersgruppe bei der Therapie zu berücksichtigen, den Herausforderungen der interprofessionellen Zusammenarbeit für eine angemessene Versorgung dieser Patienten gerecht zu werden und dem Wunsch vieler Patienten und den an der Behandlung beteiligten Professionen nach einer besseren Versorgung zu entsprechen.

Die speziellen Ziele beinhalten:

i ) Bestehende Strukturen verbessern, wenn diese das Überleben und die Lebensqualität nachteilig beeinflussen.

ii ) Die erforderliche Expertise in einem geeig­neten multiprofessionellen Team verfügbar zu machen, auch wenn dies über die traditionellen Gesundheitsstrukturen hinausgehen sollte.

iii ) Bereitstellung einer angemessenen Umgebung, die den spezifischen Bedürfnissen dieser Patientengruppe gerecht wird.

Hierfür wurden in den verschiedenen Ländern unterschiedliche Maßnahmen ergriffen. Verschiedene Wege zu Verwirklichung der integrier­ten Zusammenarbeit von pädiatrischen und internistischen Mitarbeitern werden vorgestellt.

Key words

cancer - teenager - young adult - specialist services

Schlüsselwörter

Krebs - Teenager - junge Erwachsene

• References

• 1 Birch R. Teenagers and Young Adults with Cancer. Leeds: Leeds; 2013
• 2 Bleyer A, Choi M, Fuller CD et al. Relative lack of conditional survival improvement in young adults with cancer. Semin Oncol 2009; 36: 460-467
• 3 Bleyer A, Montello M, Budd T et al. National survival trends of young adults with sarcoma: lack of progress is associated with lack of clinical trial participation. Cancer 2005; 103: 1891-1897
• 4 Boissel N, Auclerc MF, Lheritier V et al. Should adolescents with acute lymphoblastic leukemia be treated as old children or young adults? Comparison of the French FRALLE-93 and LALA-94 trials. J Clin Oncol 2003; 21: 774-780
• 5 Butow P, Palmer S, Pai A et al. Review of adherence-related issues in adolescents and young adults with cancer. J Clin Oncol 2010; 28: 4800-4809
• 6 CanTeen Australia. 2013 (Accessed 04-07-2013, 2013, at https://www.canteen.org.au/ )
• 7 CanTeen Ireland. 2009 (Accessed 04-07-2013, 2013, at http://www.canteen.ie/ )
• 8 Chan JK, Urban R, Cheung MK et al. Ovarian cancer in younger vs older women: a population-based analysis. Br J Cancer 2006; 95: 1314-1320
• 9 Cluzeau TDN, Huguet F, Raffoux E et al. A Pediatric Treatment of Ph-Negative Acute Lymphoblastic Leukemia (ALL) Is Effective and Safe In Adolescents and Young Adults (AYAs) until 29 Years of Age. American Society of Haematology (ASH). 2010
• 10 Curriculum for Specialty Training In Medical Oncology. 2010 at http://www.gmc-uk.org/Medical_Oncology_curriculum_2010.pdf_32731045.pdf )
• 11 European Cancer Organisation. 2013 (Accessed 04-07-2013, 2013, at http://www.ecco-org.eu/ )
• 12 European Society for Medical Oncology. 2013 (Accessed 04-07-2013, 2013, at http://www.esmo.org/ )
• 13 Gatta G, Zigon G, Capocaccia R et al. Survival of European children and young adults with cancer diagnosed 1995-2002. Eur J Cancer 2009; 45: 992-1005
• 14 Groupe Onco-hematologie Adolescents et Jeunes Adultes. 2013 ­(Accessed 04-07-2013, 2013, at http://go-aja.fr/index.php?code=o8KV0p3C39rX2dPmxA==&PHPSESSID=o4i7qt0c3jomggudvcrvuvnqi7 )
• 15 Hollis R, Morgan S. The adolescent with cancer – at the edge of no-man’s land. Lancet Oncol 2001; 2: 43-48
• 16 Hunger SP, Lu X, Devidas M et al. Improved survival for children and adolescents with acute lymphoblastic leukemia between 1990 and 2005: a report from the children’s oncology group. J Clin Oncol 2012; 30: 1663-1669
• 17 International Society of Paediatric Oncology. 2013 (Accessed 04-07-2013, 2013, at http://siop-online.org/ )
• 18 Kelly D, Pearce S, Mulhall A. ‘Being in the same boat’: ethnographic insights into an adolescent cancer unit. Int J Nurs Stud 2004; 41: 847-857
• 19 Lewis IJ. Cancer in adolescence. Br Med Bull 1996; 52: 887-897
• 20 Michelagnoli MP, Pritchard J, Phillips MB. Adolescent oncology – a homeland for the “lost tribe”. Eur J Cancer 2003; 39: 2571-2572
• 21 Moorman AV, Harrison CJ, Buck GA et al. Karyotype is an independent prognostic factor in adult acute lymphoblastic leukemia (ALL): analysis of cytogenetic data from patients treated on the Medical Research Council (MRC) UKALLXII/Eastern Cooperative Oncology Group (ECOG) 2993 trial. Blood 2007; 109: 3189-3197
• 22 NICE (UK) . Improving outcomes in children and young people with cancer. Cancer service guidance. London: 2005
• 23 Nicholson BD, Picton SV, Chumas P et al. Changes in the patterns of care of central nervous system tumours among 16-24 year olds and the effect on survival in Yorkshire between 1990 and 2009. Clin Oncol (R Coll Radiol) 2013; 25: 205-214
• 24 Palmer RD, Murray MJ, Saini HK et al. Malignant germ cell tumors display common microRNA profiles resulting in global changes in expression of messenger RNA targets. Cancer Res 2010; 70: 2911-2923
• 25 Paulussen SAS, Juergens HF. Cure rates in Ewing tumor patients aged over 15 years are better in pediatric oncology units. Results of GPOH CESS/EICESS studies. Proc Am Soc Clin Oncol 2003; 816
• 26 Paulussen MDU, Jürgens H, Ranft A. Should Adolescents with Ewing Sarcoma be treated in pediatric or non-pediatric oncology institutions? An analysis of GPOH Ewing trial (CESS/EICESS/EURO-E.W.I.N.G.) data. Pediatr Blood Cancer 2012; 1046
• 27 Stock W, La M, Sanford B et al. What determines the outcomes for adolescents and young adults with acute lymphoblastic leukemia treated on cooperative group protocols? A comparison of Children’s Cancer Group and Cancer and Leukemia Group B studies. Blood 2008; 112: 1646-1654
• 28 Survival in Teenagers and Young Adults with Cancer in the UK 2012 (Accessed 02-07-2013, 2013, at http://www.ncin.org.uk/view.aspx?rid=1607 .)
• 29 Teenage Cancer Trust, Research. 2013 (Accessed 05-07-2013, 2013, at http://www.teenagecancertrust.org/what-we-do/research/ )
• 30 Teenagers and Young Adults with Cancer. 2013 (Accessed 04-07-2013, 2013, at http://www.tyac.org.uk/ )
• 31 The Teenage Cancer Trust International Conference. 2013 (Accessed 04-07-2013, 2013, at http://www.teenagecancertrust.org/what-we-do/international-conference/registration/ )
• 32 Thomas DM, Albritton KH, Ferrari A. Adolescent and young adult oncology: an emerging field. J Clin Oncol 2010; 28: 4781-4782
• 33 Weir HK, Marrett LD, Cokkinides V et al. Melanoma in adolescents and young adults (ages 15–39 years): United States, 1999–2006. J Am Acad Dermatol 2011; 65: S38-S49