Using Teamwork to Bridge the Adolescent and Young Adult Gap

Abstract

PURPOSE: Individuals diagnosed with cancer age between 15 and 39 years (adolescents and young adults [AYAs]) have not seen improvement in survival compared with children or older adults; clinical trial accrual correlates with survival. Unique unmet needs among AYAs related to psychosocial support and fertility preservation (FP) are associated with health-related quality of life. METHODS: We enhanced existing structures and leveraged faculty/staff across pediatric/adult oncology to create novel teams focused on AYA (age 15-39 years) care at a single center, with minimal dedicated staff and no change to revenue streams. We aimed to influence domains shown to drive survival and health-related quality of life: clinical trial enrollment, physician/staff collaboration, psychosocial support, and FP. We captured metrics 3 months after patients presented to the institution and compared them before/after Program implementation using descriptive statistics. RESULTS: Among 139 AYAs (age 15-39 years) from the pre-Program era (January 2016-February 2019: adult, n = 79; pediatric, n = 60), and 279 from the post-Program era (February 2019-March 2022: adult, n = 215; pediatric, n = 64), there was no change in clinical trial enrollment( P ≥ .3), whereas there was an increase in the proportion of AYAs referred for supportive care and psychology (pediatric: P ≤ .02; adult: P ≤ .001); whose oncologists discussed FP (pediatric: 15% v 52%, P < .0001; adult: 37% v 50%, P = .0004); and undergoing FP consults (pediatric: 8% v39%, P < .0001; adult 23% v 38%, P = .02). CONCLUSION: This team-based framework has effected change in most targeted domains. To affect all domains and design optimal interventions, it is crucial to understand patient-level and facility-level barriers/facilitators to FP and clinical trial enrollment.

Access to Care for Adolescents and Young Adults With Cancer in the United States: State of the Literature

“…86 One program recently presented concrete metrics as an example of a pragmatic approach to monitoring the effectiveness of program implementation along its four domains, each of which affects outcomes (health-related quality of life or survival): (FP: % AYAs with documented FP discussion with oncology, % AYAs with REI consult), psychosocial support (% AYAs seen by AYA social worker, psycho-oncology, and supportive care), patient/staff collaboration (number patients presented at AYA tumor boards), and clinical trial enrollment (% AYAs enrolled on clinical trials). 66…”

“…To facilitate collaboration, many recommend a multidisciplinary meeting that includes pediatric and adult oncology, along the lines of a tumor board, whether this is integrated into existing disease-team meetings or separate; while some groups rank this lowest in priority, 87 others see it as key to facilitating collaboration. 66,84 A newer concept is navigation. Although there are many different approaches, AYA navigators have become an important component of multidisciplinary AYA cancer care in many programs.…”

Teams, Teaming, and Complex Systems in Cancer Care

“…Teams, MTSs, and even teaming typically comprise core and peripheral members. Research has found that there is a premium on coordination with the core member(s) of a team 27 and among core team representatives in more complex MTS arrangements, such as AYA multidisciplinary teams (Wolfson), 28 main and community affiliate sites in the same health care system (Roberts). 29,30 Mechanisms such as the interoperability of health information technology 31 and dedicated program coordinators with integrated screening tools have shown promise (Fleege), 32 whereas the colocation of multidisciplinary care versus serial care (Majumdar, Smeltzer) 33,34 and other structural arrangements (O'Malley) 35 have yielded mixed results.…”

Construction and validation of a tool for measuring the needs of adolescents and young adults (AYAs) diagnosed with cancer: the QUestionnaire nEEd Cancer AYAs : QUEEC-AYAs

“…This population of young patients is habitually de ned by the diagnosis of a tumour in an individual aged 15 to 25 [7], although some international studies extend the upper age to 29 or even 39 [8, 9]. However, AYAs are a particular population whose enrolment in clinical trials remains low relative to the adult and paediatric populations and whose barriers and facilitators to enrolment may differ from those of other age groups [10][11][12]. Moreover, this inadequate integration of AYAs in studies makes the improvement of results regarding survival weaker than those obtained among child and adult populations [13].…”