National Cancer Research Institute Teenage and Young Adult Clinical Studies Group: The United Kingdom Approach to Research. International Perspectives on AYAO, Part 4

Abstract

The unique psychosocial needs of teenagers and young adults (TYAs) with cancer have been recognized for some time in the United Kingdom. The non-profit Teenage Cancer Trust pioneered dedicated units for TYAs in 1990, and by 2005, the United Kingdom National Institute for Health and Clinical Excellence (NICE) issued healthcare policy advocating age-appropriate care. The National Cancer Research Institute Teenage and Young Adult Clinical Studies Group (NCRI TYA CSG) was also established in 2005. This national research group promotes and generates research specifically for TYAs with cancer, broadly those aged 13-24 years at diagnosis. The work of the TYA CSG to date has focused on six themes: (1) benchmarking clinical trial availability and access for TYAs; (2) developing links with other NCRI tumor-specific Clinical Studies Groups; (3) identifying priority areas for health services research; (4) evaluating the requirement for a cancer registry function for TYAs; (5) identifying issues for late effects and survivorship; and (6) identifying host- and tumor-specific biological differences in TYA cancer. Here we describe some of the research developments of the NCRI TYA CSG in the context of cancer research in the United Kingdom and healthcare policy for TYAs.

Does age matter? Comparing post‐treatment psychosocial outcomes in young adult and older adult cancer survivors with their cancer‐free peers

“…These findings are likely to generalize beyond Canadian borders due to the congruency of much AYA psycho‐oncology research across OECD countries . In recent years, some countries have launched national AYA oncology programs, and studies using population‐level data across countries could provide important comparisons with our results, as well as comparisons of the efficacy of AYA cancer‐survivor programs based on the needs we and others document. Future research might also focus on temporal trends over time within Canada and other countries while also examining differential responses where psychosocial AYA programs are available.…”

“…These findings are likely to generalize beyond Canadian borders due to the congruency of much AYA psychooncology research across OECD countries. 31 In recent years, some countries have launched national AYA oncology programs, 26,[32][33][34][35] and studies using population-level data across countries could pro-…”

An analysis of the development of adolescent and young adult cancer care in the United Kingdom: A Foucauldian perspective

“…Research produced in the AYA cancer community currently spans the cancer experience of young people in clinical trials (e.g., Schafer & Hunger, ), through to applied psychosocial research (e.g., Zebrack et al., ) and research priority setting in this age group (Aldiss, Fern, Phillips, & Gibson, ). Over the last 25 years, we have seen more explicit evidence emerge to inform AYA cancer policy and standards in UK (NICE, ), and small but important advances in AYA cancer care such as highlighting issues with routes to diagnosis (Fern et al., ; Gibson et al., ), and raising awareness of challenges for AYAs with cancer in accessing clinical trials (Fern, Lewandowski, Coxon, & Whelan, ; Fern & Whelan, , ).…”

Accrual of Adolescents and Young Adults with Cancer to Clinical Trials

“…Factors contributing to the U.K. success include the establishment of a Teenage and Young Adult Clinical Studies Group, an increase in the profile of ayas among researchers conducting clinical trials, expansion of the age eligibility criteria for clinical trials, and increased collaboration between the pediatric and adult communities 12 . Through the ongoing collaboration of relevant stakeholders in Canada, the effort to better understand the hindrances to clinical trial participation and to actively develop strategies and systems to overcome those hindrances continues, in pursuit of the ultimate goal of improved survival and quality of life for ayas with cancer.…”

“…International Society of Paediatric Oncology symposia on aya oncology have focused on the challenges of accruing ayas to cancer clinical trials, as reflected in national initiatives in Australia 10 , Italy 11 , the United Kingdom 12 , and the United States 13 . Recognizing that cancer is the leading cause of death from disease for ayas, the American Society of Clinical Oncology launched their Focus Under Forty initiative (http://university.asco.org/focus-under-forty) and, in collaboration with philanthropic and professional organizations, designed education programs to increase awareness of the unique biology and care issues associated with cancer in this age group, including clinical trials.…”