Abstract
BACKGROUND: Survivors of pediatric central nervous system (CNS) tumors are at risk for persistent tumor/treatment-related morbidity, physical disability and social consequences which may intrude into self-perception, vital for mental health and quality of life. Within the longitudinal Swedish CNS tumor LIFE-study, we studied the long-term impact of the childhood CNS tumor and its' treatment on self-perception in significant domains in adult survivors, by comparing outcomes with those of the general population. METHODS: The cohort included 697 Swedish survivors diagnosed between 1982 and 2001 with a primary CNS tumor. Comparison data were collected from a stratified general population random sample. Survivors and general population individuals were compared as regards self-perception in five domains: body image, sports/physical activities, peers, work, and family, and as regards a global self-esteem index. Within the survivor group, determinants of impact on self-perception were identified. RESULTS: The final sample included 528 survivors, 75.6% of the entire national study cohort. The control sample consisted of 995 individuals, 41% of 2,500 those addressed. Survivors had significantly poorer self-perception outcomes in domains of peers, work, body image, sports/physical activities, and in the global self-perception index, compared with those from the general population (all P < 0.001). Within the survivor group, female gender and persistent visible physical appearance sequelae predicted poorer outcomes in several of studied domains. CONCLUSION: Intrusion into self-perception appears as a potential long-term psychological late effect in adult survivors after pediatric CNS tumors and the brain tumor treatment. Because of this risk, patient care and psychosocial follow-up should include measures similar to what was used in this study. Paying attention to self-perception in follow-up care enables identifying, preventing, and managing of here identified adverse psychological impact of the illness on self-identity, crucially related to mental health and quality of survival.
