How cancer impacts adolescents’ and young adults’ (AYAs) scholastic experiences: Insight on supportive survivorship care needs from AYAs, parents, and clinicians.

Abstract

11053 Background: Cancer disrupts AYAs’ educational and vocational trajectories given treatment demands and acute or late effects of treatment on cognitive functioning. This occurs during a developmental phase when scholastic experiences are central to AYAs’ socioemotional and cognitive growth. Despite education being a critical determinant of health-related quality of life, typically families do not receive support for scholastic issues. According to clinical guidelines, key stakeholders in cancer care must have a shared understanding of these concerns to effectively address them. We aimed to identify how cancer impacts scholastic experiences when diagnosed at age 15-29 through the perspectives of diagnosed AYAs, parents caring for AYAs, and AYA oncology clinicians. Methods: Drawn from studies funded by The Leukemia & Lymphoma Society and an NCI-Designated Cancer Center, a secondary thematic analysis was conducted on three interview datasets: AYAs (n=10); parents (n=15); clinicians (e.g., oncologists, APPs, LCSWs) (n=7). Analyses were separated by stakeholder group and triangulated to identify shared perspectives. Results: AYAs, parents, and clinicians all describe cancer contributing to four challenging scholastic-related impacts: 1) having to advocate for academic accommodations (e.g., virtual option, reduced workload, disability assistance); 2) disrupting school/vocational trajectories (e.g., relocating/changing schools for treatment, stopping school/career pursuits, limitations in performance); 3) losing extracurriculars (e.g., sports, school activities); and 4) losing peer social connection (e.g., feeling isolated/disconnected). They collectively described the impacts as distressful, as a parent expressed: “He was managing all this mental and emotional pain [with cancer], and then [the school] caused so much other stress and pain in our life.” One positive impact was identified by AYAs and parents: changing mindsets about school/career (e.g., using school/work as motivator or way to take control, being inspired to change passion/paths). Conclusions: Findings illustrate distressful scholastic issues parents and AYAs need support with during cancer care. AYAs and parents described having to advocate on their own with no support. While clinicians recognized the same concerns as patients/caregivers, AYAs and parents described needing to initiate discussions with clinicians, further demonstrating a need to streamline scholastic performance into the standard of care. AYAs and parents recognized cancer could also impact AYAs’ mindset about school/work in a positive manner, thus, addressing scholastic concerns may help empower and engage AYAs. Findings can inform resources and support the importance of developing a patient-centered metric that addresses scholastic performance in AYA survivors.