Starting an Adolescent and Young Adult Program: Some Success Stories and Some Obstacles to Overcome

Abstract

Adolescent and young adult (AYA) patients seem to be in a sort of no-man's land, halfway between the two different worlds of pediatric and adult medical oncology and bearing the brunt, in terms of inclusion in clinical trials and quality of professional care, of the lack of integration between these two worlds. This article discusses the different organization models of care used in pediatric oncology (mainly family-focused) and in adult medical oncology (disease-focused). There is a growing awareness that these models are not ideally suited to the complex needs of AYA patients, which require a different, new, patient-focused multidisciplinary approach. A comprehensive, multipronged effort is required to bridge the gap in the care of AYA patients, with the ultimate challenge of creating a new discipline, AYA oncology. In this article, we review the experiences of AYA oncology programs in Europe, North America, and Australia, focusing on similarities and differences in strategy, as well as the major challenges and opportunities faced by these programs. Among the most important factors for the successful establishment of an AYA oncology service are the degree of engagement of both pediatric and adult medical oncologists, the philanthropic support of powerful charities, and the role of dedicated professionals across a range of disciplines in driving the development of services for AYA patients.

Empowerment in adolescents and young adults with cancer: Relationship with health‐related quality of life

“…In the Netherlands, approximately 2700 AYA patients are diagnosed with cancer annually, which is approximately 5 times the number of cases diagnosed in children aged birth to 17 years 3. In addition to differences in tumor biology, limited progress in survival, lower clinical trial participation rates, and insufficient awareness of cancer symptoms among patients and professionals, this group has distinctive psychosocial and supportive care needs compared with their younger and older counterparts 1. Late adolescence and young adulthood is a period of complex development; for example, it is during this period that one creates one's own identity and body image, and establishes autonomy, responsibility, and independence.…”

Influencing Referral of Adolescents and Young Adults With Cancer to Sites With Higher Rates of Trial Enrollment

“…27 The British Teenage Cancer Trust units have been very successful, but these were funded through a very large philanthropy and aided by a national health system that provided a common financial structure, institutional review board, and other centralized operations to both the pediatric and adult side. 28,29 It is proving to be more of a challenge in the United States, and will likely be even more complex in the community in which pediatric and adult hospitals have less ties and structure binding them.…”

Adolescent survivor of childhood Acute Myeloid Leukaemia undertakes pregnancy with a severe anthracycline induced cardiomyopathy and risk taking behaviours

“…Open communication between an AYA cancer survivor and their physician, that is sensitive to their maturity and level of independence [19] is essential for establishing what goals of care are important to the patient and clarifying any misconceptions they may have. A more flexible communication style on the part of the healthcare professional has been shown to reduce rejection by the AYA patient of medical advice and increase the likelihood of adherence.…”