CNS tumours of childhood/adolescence : outcomes related to disability and identity in adult survivors

Abstract: Central nervous system (CNS) tumour survivors are at increased risk for adverse health and functional late effects. Results from previous studies from the Swedish LIFE project, of which this licentiate thesis is a part, indicate needs of expanded clinical surveillance, and long-term follow-up in order to reduce late effects and protect quality of survival. The focus of the licentiate thesis is on psychological consequences of illness- and treatment-related late effects in adult survivors of childhood CNS tumours. Particularly, the studies address outcomes associated with identity and self-perception. These factors are usually considered as vital components of mental health and psychological well-being. The aim combined of Study I and II of the licentiate thesis was to examine the long-term impact of childhood CNS tumours and their treatment on self-perception of adult survivors. Study I investigated the extent to which health- and functional status of survivors predicted outcomes in self-confidence related to body image and physical ability, as they appeared in adult age. In Study II survivors and general population individuals were compared as regards self-perception in six domains: body, sports/athletics, peers, work, and family, and as to a global self-esteem index. Data in Study I and Study II covered between 526 to 528 survivors from the entire national cohort of Swedish survivors diagnosed between 1982 and 2001 with a primary CNS tumour. Comparison data in Study II were collected from 995 randomly selected stratified general population individuals. The outcomes were based on quantitative self-report data, including the multidimensional Self- Esteem Questionnaire (SEQ-42) and, in Study I also Health Utilities IndexTM Mark2/3 (HUI2/3), which provides patients’ self-reported outcomes regarding health and functional status. Findings from Study I indicated that self-confidence related to body image and physical ability was negatively affected by health, functional status, and disability in adult survivors. Findings from Study II showed that self-perception of CNS tumour survivors were poorer in all domains (except family) and in the global self-esteem summary measure, compared with the general population. The long-term CNS tumour survivors constitute a high-risk group regarding functional and psychological late effects. The poorer self-perception outcomes of survivors can be interpreted as a likely indirect effect of the cancer diagnosis and treatment. Self-perception and self-esteem are significant elements of mental health and quality of survival. The findings show the importance of paying attention to both medical and psychological care and follow-up needs in early and post-treatment surveillance of CNS tumour survivors.