Patterns of Independence in Adolescent/Young Adult (AYA) Survivors of Childhood Cancer Having Received Radiotherapy (RT)

Abstract

AYA cancer survivors are at risk for missed care opportunities due to transitions of care and movement towards independence. This study was undertaken to evaluate steps towards independence of AYA survivors voluntarily using a free, Internet-based tool for creation of survivorship care plans (SCP). A free, publicly accessible tool, Smart-ALACC (Smart Adult Living after Childhood Cancer) was made available on Oncolink.org. Analysis of convenience sample frame was performed with IRB approval. From 12/2017-12/2022, 676 AYA survivors utilized the tool; 55% (372) identified as female. Most (75%, 506) were white, 7% (48) Black, 7% (46) Asian, 6% (42) Hispanic, 5% other/ mixed race. Median age was 20y (R <16 - 46y) and median age at diagnosis was 11 y (R <1y - 21). Most common diagnoses were leukemia (31%, 212), lymphoma (21%, 140), sarcoma (14%, 95), CNS (9%, 54), and neuroblastoma (5%, 37). 311 pts (46%) reported having had RT, most commonly brain (PB) (19%, 60), "mantle" (14%, 43), craniospinal (CSI) (12%, 36), total body irradiation (TBI) (11%, 34), and head/ neck (8%, 26). Most (92%, 619) denied recurrence /secondary malignancy. Users reported being students (64%, 434) or working (24% (163)) full-time (20%) or part-time (4%); 4% (25) were neither. Most reported living with parents (71%, 482), 14% (92) with a partner/ spouse, 7% (46) alone, and 4% (30) with a roommate. Most reported using parental insurance (54%, 368), while 24% (163) had their own private insurance, 7% (49) public, and 2% uninsured. Of 466 users 18+ (466), more were employed (34%, 155, p = 0.04), living separately from parents (40%, 168, p < 0.001), and had independent insurance (52%, 184, p = 0.03). Of users 23+ (244), 141 (57%) were being employed (p < 0.001), 83% (153) living separately from parents (p < 0.001), and 165 (67%) had independent insurance (p < 0.001). Among users age 23+, survivors who had received brain RT (CSI, brain, or TBI) were less likely to live separately parents or with a spouse/ partner (p < 0.001), but equally likely to be employed (Table 1). AYA survivors choosing to use a SCP tool have diagnoses reflective of diagnostic patterns in pediatric oncology; many have had RT expected to be associated with cognitive and developmental late effects. Despite this, trends towards employment and independence were evident in young adult population compared to adolescent; somewhat less so in survivors having had brain RT. These data suggest that AYA survivors display independence from parents and require population directed survivorship support; future efforts should aim to include a more diverse body of users.