Pre-existing neurodevelopmental and neuropsychiatric difficulties in children with brain tumours: implications for future outcome studies

Abstract

SIR–In recent months there has been renewed interest in promoting the early detection of brain tumours in children. Delay in the diagnosis of brain tumours causes distress to the patient, their family, and the clinician. Studies into the presenting features of children with newly diagnosed brain tumours have tended to concentrate on identifying discriminatory signs or symptoms in the child which would prompt earlier referral for further investigation. We would like to highlight our own observations about the importance of careful screening in these newly diagnosed patients for neurodevelopmental problems. Outcome studies in children with brain tumours have tended to concentrate on survival rates and on cognitive and developmental measures post treatment. There is currently a relative paucity of information regarding neurodevelopmental and neuropsychiatric disorders in children presenting with brain tumours prior to the commencement of treatment. Our paediatric Neuro-oncology Multidisciplinary Team thinks that there is a high prevalence of pre-existing neurodevelopmental and neuropsychiatric problems in children with brain tumours before treatment is started. We would suggest that the early identification of these problems has important implications both for the management of the individual child and for future outcome studies. We reviewed the clinical notes and neurodevelopmental histories of all children with newly diagnosed brain tumours presenting to our service between July 2006 and November 2009. During this period 131 children with newly diagnosed brain tumours were identified. In 13 out of 131 (9.9%) of these patients a pre-existing neurodevelopmental problem was documented (Table SI published online only). In all cases children had been under follow up by local Paediatric and Community Paediatric services. Diagnoses of speech and developmental delay had been made following assessment by these services, including use of the Griffiths Mental Development Scales. Particularly striking was the 6 out of 131 (4.6%) children with documented autistic spectrum disorders (ASDs), well above the 1% prevalence expected in the general population. These diagnoses were made following comprehensive patient multidisciplinary assessment, including either the 3Di computer assessment, the Autism Diagnostic Interview or the Diagnostic Interview for Social and Communication Disorders. In a number of children longstanding psychiatric comorbidity was also documented. As might be expected, a number of these children had confirmed diagnosis of tuberous sclerosis (n=4) or neurofibromatosis (n=2), conditions pre-disposing to both tumour development and neurodevelopmental problems. In a number of children no such predisposition could be found. It is uncertain to what extents direct tumour effects contributed to the neurodevelopmental problems for each individual child. There may be an as yet unrecognised genetic predisposition to both tumour and developmental problem. We believe that our case series demonstrates a high prevalence of neurodevelopmental problems, particularly ASDs, in children presenting with newly diagnosed brain tumours. We welcome ongoing work to promote the early identification of children with brain tumours and would like to take the opportunity to encourage clinicians involved in the management of these patients to consider routine screening for neurodevelopmental problems and psychiatric comorbidity in order to help determine the true prevalence of these problems in this important patient group.