Abstract
Adolescent and young adult (AYA) oncology patients are commonly defined by the National Cancer Institute as individuals aged 13–39 years [1, 2]. For the purpose of this chapter, we will focus on the subset of early AYA age 13–21 years (AeYA) as this younger age group is more representative of the ages of AYA most commonly treated in pediatric hematology-oncology centers. Adolescence is a unique developmental period characterized by biological, psychological, and social tasks which vary as an individual passes from early adolescence through mid-adolescence and onward to late adolescence [3]. AeYA represents a unique patient population, positioned between childhood and burgeoning adulthood. This developmental stage is marked by rapid brain maturation and neurocognitive advances; one such example of psychological development is the shift from concrete thinking patterns to more complex abstract thought patterns [3–5]. Socially, the period of adolescence is typically marked by the emotional separation from parents, stronger identification with peers, and greater social autonomy as the AeYA moves toward independence [3–6].
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References
National Cancer Institute. Adolescents and young adults with cancer: www.cancer.gov/types/aya. 2017.
Bleyer A, O’Leary M, Barr R, LAG R. Cancer epidemiology in older adolescents and young adults 15 to 29 years of age, including SEER incidence and survival: 1975–2000. National Cancer Institute, NIH Pub. No. 06-5767. Bethesda, MD: National Institutes of Health; 2006.
Christie D, Viner R. ABC of adolescence: adolescent development. BMJ. 2005;330(7486):301.
McIntosh N, Helms P, Smyth R, editors. Forfar and Arneil’s textbook of paediatrics. 6th ed. Edinburgh: Churchill Livingstone; 2003. p. 1757–68.
Prasad PK, Hardy KK, Zhang N, Edelstein K, Srivastava D, Zeltzer L, et al. Psychosocial and neurocognitive outcomes in adult survivors of adolescent and early young adult cancer: a report from the Childhood Cancer Survivor Study. J Clin Oncol. 2015;33(23):2545–52.
Sisk CL, Foster DL. The neural basis of puberty and adolescence. Nat Neurosci. 2004;7(10):1040–7.
Beauchamp TL, Childress JF. Principle of biomedical ethics. 5th ed. New York, NY: Oxford University Press; 2001.
Faden RR, History BTLA. Theory of Informed Consent. New York, NY: Oxford University Press; 1986.
Committee on Bioethics. Informed consent in decision-making in pediatric practice. Pediatrics, 2016;138(2), e20161484.
Grady C, Cummings SR, Rowbotham MC, McConnell MV, Ashley EA, Kang G. Informed consent. N Engl J Med. 2017;376(9):856.
Sturman ED. The capacity to consent to treatment and research: a review of standardized assessment tools. Clin Psychol Rev. 2005;25(7):954–74.
Sessums LL, Zembrzuska H, Jackson JL. Does this patient have medical decision-making capacity? JAMA. 2011;306(4):420–7.
Jourdan JB, Glickman L. Reasons for requests for evaluation of competency in a municipal general hospital. Psychosomatics. 1991;32(4):413–6.
Leikin S. The role of adolescents in decisions concerning their cancer therapy. Cancer. 1993;71(10):3342–6.
Blackstone’s commentaries on the laws of England [book IV, ch 2]. http: www.lonang.com/exlibris/blackstone/bla-402.htm#fn1u.s. Accessed 23 Dec 2005.
Caldwell and Caldwell v Bechtol Supreme Court of Tennessee 724 SW2d 1987.
Wendler DS. Assent in paediatric research: theoretical and practical considerations. J Med Ethics. 2006;32(4):229–34.
Leikin SL. Minors’ assent or dissent to medical treatment. J Pediatr. 1983;102(2):169.
Pyke-Grimm KA, Degner L, Small A, Mueller B. Preferences for participation in treatment decision making and information needs of parents of children with cancer: a pilot study. J Pediatr Oncol Nurs. 1999;16(1):13–24.
Coyne I, Amory A, Kiernan G, Gibson F. Children’s participation in shared decision-making: children, adolescents, parents and healthcare professionals’ perspectives ad experiences. Eur J Oncol Nurs. 2014;18:273–80.
Zwaanswijk M, Tates K, vanDulmen S, Hoogerbrugge P, Kamps W, Bensing J. Young patients’, parents’, and survivors’ communication preferences in paediatric oncology: results of online focus groups. BMC Pediatr. 2007;7:35.
Fedutner C. Collaborative communication in pediatric palliative care: a foundation for problem-solving and decision-making. Pediatr Clin N Am. 2007;54(5):583–607.
Spinetta JJ, Masera G, Jankovic M, Oppenheim D, Gentil Martins A, Weyl Ben Arush M, van Dongen-Melman J, Epelman C, Medin G, Pekkanen K, Eden T. Valid informed consent and participative decision-making in children with cancer and their parents: a report of the SIOP working committee on psychosocial issues in pediatric oncology. Med Pediatr Oncol. 2003;40:244–6.
Whitney S, Ethier AM, Fruge E, Berg S, McCullough LB, Hockenberry M. Decision making in pediatric oncology: who should take the lead? The decisional priority in pediatric model. J Clin Oncol. 2006;24(1):160–5.
Diekema DS. Parental refusals of medical treatment: the harm principle as threshold for state intervention. Theor Med Bioeth. 2004;25(4):243–64.
Goodlander E, Berg JW. Pediatric decision-making: adolescent patients. In: Diekema DS, Mercurio MR, Adam MB, editors. Clinical ethics in pediatrics: a case-based textbook. Cambridge: Cambridge University Press; 2011. p. 7–13.
Salter EK. Conflating capacity & authority: why we’re asking the wrong question in the adolescent decision-making debate. Hast Cent Rep. 2017;47(1):32–41.
Coleman DL, Rosoff PM. The legal authority of mature minors to consent to general medical treatment. Pediatrics. 2013;131:786–93.
Hayes MM, Turnbull AE, Zae S, White DB, Bosslet GT, Wilson KC, Thompson CC. Responding to requests for potentially inappropriate treatments in intensive care units. Ann Am Thorac Soc. 2015;12(11):1697–9.
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Levine, D., Johnson, LM. (2020). Unique Considerations for Adolescents and Young Adults. In: Mazur, K., Berg, S. (eds) Ethical Issues in Pediatric Hematology/Oncology . Springer, Cham. https://doi.org/10.1007/978-3-030-22684-8_5
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