The effect of pediatric central nervous system tumors on identity in young adult survivors: a project REACH study

Purpose Of all childhood cancers, adult survivors of pediatric central nervous system (CNS) tumors are at the highest risk for late mortality as well as neurocognitive, physical, and psychosocial late effects. Their identity with cancer survivorship, the relationship of their identity to health outcomes, and how their identity differs from other childhood cancer survivors is poorly understood. Methods A total of 127 young adults previously treated for pediatric CNS tumors enrolled in Project REACH, a locally-treated childhood cancer survivor cohort. Participants completed self-report measures on the effects of cancer on identity, someone who had cancer, victim and survivor identity, frequency of thoughts of diagnosis, and health outcomes. Results The majority of participants identified as a survivor (83%). Survivor identity was linked to diagnosis and treatment but not health outcomes. A minority (9%) endorsed a victim identity, and they were more likely to have poorer mental health ( p = 0.03) and depression ( p = 0.04) than non-victims. Participants who reported a stronger effect of cancer on their identity also had poorer mental health ( p = 0.005). A higher frequency of diagnosis-related thoughts was associated with significantly poorer mental health ( p