Altered self-perception in adult survivors treated for a CNS tumor in childhood or adolescence: population-based outcomes compared with the general population

Central nervous system (CNS) tumors are the second most common childhood cancer and the most frequent solid tumor in children, constituting ∼ 28% of all pediatric malignancies.1,2 Because current anticancer treatments have improved survival rates, research increasingly has come to address late adverse effects, aftercare, rehabilitation, and follow-up needs of patients. The findings from these studies confirm that persistent health sequelae and adverse psychological and social consequences are common despite successful initial treatment of the primary tumor.3–10 In addition, illness and chronic disabilities may interact unfavorably with normal aging7,11–14 and intrude upon self-perception, with consequences for self-esteem, working status, social relationships, and sexuality.15 Self-perception, self-esteem, and self-identity are related concepts that refer to the degree to which individuals view, value, accept, and appreciate themselves as being capable, significant, and successful.16 Self-esteem also is linked closely to mental health and quality of life,17–20 and low self-esteem has been specifically associated with social risk behaviors, bullying, and suicidality.21,22 Apparently, clinical follow-up, aiming at comprehensive monitoring of adverse sequelae, should include paying attention to such psychological outcomes in order to more fully safeguard quality of survival after childhood CNS tumor treatment.23–26 However, the long-term impact of pediatric CNS malignancies and their treatment on self-identity of adult survivors has not been addressed in large-scale studies. As a result, our knowledge about how childhood CNS tumor history and lingering physical late effects affect self-perception is still incomplete. Therefore, the aim of this study was to characterize the overall impact of disease and treatment on these outcomes in a Swedish cohort of adult survivors treated for pediatric CNS tumors according to standard treatment protocols. For that purpose, self-perception in several domains was studied, and outcomes of survivors were compared with those of the general population. Furthermore, the extent to which self-perception of survivors was associated with a set of illness-related factors was examined (sex, subdiagnosis, age at diagnosis, current age, and visible physical sequelae).