Pattern of symptoms and signs of primary intracranial tumours in children and young adults: a record linkage study

Objective To describe the age pattern and temporal evolution of symptoms and signs of intracranial tumours in children and young adults before diagnosis. Design and setting A record linkage study using population-based data from the National Cancer Registry, linked to Clinical Practice Research Datalink (CPRD) and Hospital Episode Statistics (HES). Patient cohort Patients aged 0-24 years when diagnosed with a primary intracranial tumour between 1989 and 2006 in England. Methods Linked records of relevant symptoms and signs in primary care and hospitals were extracted from CPRD (1989-2006, 181 patients) and HES (1997-2006, 3959 patients). Temporal and age-specific changes in presentation rates before diagnosis of an intracranial tumour, for each of eight symptom groups, were estimated in generalised additive models. Results All symptoms presented with increasing frequency until eventual diagnosis. The frequency of presentation of raised intracranial pressure (ICP) to hospitals rose rapidly to 36.4 per 100 person-months (95% CI 34.6 to 38.4) in the final month before diagnosis in the entire cohort. Clinical features in primary care were less specific: the main features were visual disturbance (rate: 0.49 per 100 person-months; 95% CI 0.33 to 0.72) in newborns to 4-year-olds, headache in 5-year-olds to 11-year-olds (0.64; 0.47 to 0.88), 12-year-olds to 18-year-olds (1.59; 1.21 to 2.08) and 19-year-olds to 24-year-olds (2.44; 1.71 to 3.49). The predominant features at hospital admission were those of raised ICP: between 1.17 per 100 person-months (95% CI 1.08 to 1.26) in newborns to 4-year-olds and 0.77 (0.67 to 0.88) in 19-year-olds to 24-year-olds. Conclusions Non-localising symptoms and signs were more than twice as common as focal neurological signs. An intracranial tumour should be considered in patients with relevant symptoms that do not resolve or that progress rapidly.