Introduction Mortality from paediatric brain tumours has fallen significantly over recent years, but few prospective data exist concerning health status (HS).

Aims (1) To compare HS in children with brain tumours after diagnosis with healthy matched controls; (2) To assess the relationship between parent- and self-report HS.

Methods Longitudinal prospective study. Assessments took place approximately 1 (T1), 6 (T6) and 12 (T12) months post-diagnosis. HS was assessed by Health Utilities Index Mark-3 (HUI3) parent-report form at all time-points and child-report form at T12. HUI3 consists of eight attributes (domains), selected according to the importance placed on them by parents in the general public.

Results 29 patients and 32 controls were included in analysis of parent-report, and 21 patients and 22 controls of self-report HS. Median age at T12 was 11.1 years for patients, 10.7 for controls. Patients scored significantly lower than controls for global overall HS assessed by HUI3 Multi-Attribute Function (MAUF) for all comparisons (parent-report, p<0.001 for all time points; self-report p=0.009 at T12). Parent-report HUI3 MAUF improved significantly for brain tumour patients between T1 and T6 (p=0.006), but not between T6 and T12 (p=0.74). Control HUI3 MAUF did not change significantly over time. For parent-report HUI3 MAUF, 21 (81%), 16 (62%) and 18 (62%) patients had scores in the severe/moderate range at T1, T6 and T12 respectively, compared with 6 (21%), 1 (4%) and 4 (13%) for controls. For self-report at T12, 10 (48%) of brain tumour patients and 3 (14%) controls rated their overall HS in the severe/moderate range. Significant differences existed between patients and controls for parent-report single attribute utility functions (SAUFs) at T1 for ambulation, emotion, cognition and pain (maximum p=0.002); at T6 for dexterity, emotion, cognition and pain (maximum p=0.008); and at T12 for cognition (p<0.001). Correlations between parent and self-report HUI3 MAUF, and attributes vision, hearing, speech, ambulation, dexterity and cognition, were good (range rs=0.73–1.0); for emotion, moderate (rs=0.30); and pain, poor (rs=0.20). With the exception of pain, children rated their HS higher than parents.

Conclusion HS is measurable and significantly compromised in children with brain tumours in the first year after diagnosis, but improves with time.