Childhood brain tumours : Health and function in adult survivors and parental fears

Abstract: The general aim of the present research was to investigate health and functional ability of patients treated for childhood brain tumour and systematically examine parental fears after a child s brain tumour. The aims were realised through two part-studies. Childhood cancer once regarded as an acute fatal illness has become a life threatening disease. Previous studies of the long-term sequelae in survivors of children treated for a brain tumour reflect the fact that most children who do survive their tumour rarely escape without some kind of long-term consequences. The range of late effects encountered is wide, affecting any organ, system, tissue or function with variation in aetiology, timing of onset, severity and complexity. Psychological research addressing parents of children treated for childhood cancer indicates that, intrusive thoughts, avoidance, and arousal, fears and uncertainty are among the most common adverse psychological consequences. In the case of central nervous system (CNS) tumours where disease and treatment tends to be unique, and where the risk for permanent late sequelae is high, parental distress, and illness-related threat can be expected to be even greater. Data collection in study one targeted 708 eligible >18 years old childhood CNS tumour (CCNST) survivors for whom > 5 years had passed since diagnosis, 708 parent proxies, and 1,000 general population controls. Functional disability, sensory and cognitive impairment, emotional status and pain were assessed using the Health Utilities Index Mark2/3 (HUI2/3). Parents in study two were asked to rate the extent to which they experienced a set of specific fears related to their child s brain tumour and its treatment. Outcomes for parents of CNS tumour patients (n= 82) were compared to those of reference parents of patients treated for acute lymphoblastic leukaemia (n=208), and analysed in relation to treatment situation and time elapsed since diagnosis. Findings indicate that adult CCNST survivors in this population-based cohort suffered from persistent deficits in cognition, sensory functions, mobility, and self-care, whereas no emotional and pain sequels were demonstrated. Oligodendroglioma, mixed and unspecified glioma, intra-cranial germ cell tumour, and medulloblastoma survivors had the poorest overall health status. The fears concerning a future cancer recurrence and concerning late effects of treatment were most prominent among parents of CNS tumour patients. More than one in four parents expressed fears of a complete decline when thinking about their child s future. The continuous need for check-ups for possible signs of a recurrence of the illness, in the case of CNS tumours in particular, serves as a reminder to parents about the unpredictability of the final outcome that keeps the fear of a relapse alive. In conclusion, adult survivors of childhood CNS tumours are at high risk for significant functional and health-related late effects. Parental fears about health-related late effects of treatment appear as justified. The most prominent fear for parents of childhood CNS tumour patients is that of a recurrence of the cancer. Long-term surveillance should include information and support measures adapted for these parents and survivors who face unique existential challenges to live with disability and the threat of a cancer recurrence.