A longitudinal study of health related quality of life in children treated for cerebellar tumours compared with a non-tumour group

This thesis investigated health related quality of life (HRQoL) measured annually at three time points (T1, T2, T3) in children treated for medulloblastoma (SRM) or low grade cerebellar astrocytoma (LGCA) compared with a typically developing group of children. Four research questions were addressed. These were, first, whether HRQoL and other aspects of quality of survival differ between children treated for cerebellar tumours and a representative sample of children in the general population. Second, whether there are differences between HRQoL in children treated for SRM and LGCA. Third, whether HRQoL and the factors that impacted on it changed over time. Fourth whether there were any early modifiable predictors of subsequent HRQoL.Children treated for cerebellar tumours had a significantly poorer HRQoL and IQ than the Comparison group. In addition, those in the SRM group had significantly poorer health status, and behavioural and executive functioning, the latter by teacher-report only. Children in the SRM group had a significantly poorer HRQoL, health status (by parent-report only), and behavioural functioning (by teacher-report only) than children in the LGCA group. IQ and executive functioning were similar.Longitudinally, in the SRM group, HRQoL and health status improved but remained very poor. Behaviour and IQ did not improve, and executive functioning declined (by teacher-report only). In the LGCA group HRQoL and IQ did not improve and remained poor. Specific help at school increased in the SRM group from 40% at T1 to 57% at T3. In the LGCA group the percentages were 11 and 24 compared with a consistent 3% in the Comparison group, indicating increasing need for educational support in both tumour groups. Motor and sensory functioning, emotional functioning (except by parent-report at T3), and cognitive functioning (by child-report at T3 only) were consistent predictors of HRQoL over time. At T1, emotion and cognition (by child-and parent-report), child’s age (by child-report), and motor and sensory functioning (by parent-report) predicted subsequent HRQoL two years later.These findings show that impairment is evident early on in children treated for cerebellar tumours and persists over time. HRQoL remains poor particularly in the LGCA group where no improvement was observed. These children need to be assessed regularly and monitored as early intervention to mitigate cognitive and emotional difficulties especially in older children, may help to improve subsequent HRQoL. Future research should focus on early interventions.