Prevalence of psychopathology and pathways to care in adolescents with intellectual disabilities : a population study
Background: Adolescents with intellectual disability (ID) and mental health problems are a distinct group with particular difficulties, which need to be addressed. Despite the many studies available on the prevalence of mental health problems in children with intellectual disabilities, very few studies have investigated the prevalence of such disorders in adolescents with ID. Furthermore, there is little information about service provision for this specific age group. Aim: To investigate the prevalence and presentation of mental health problems in adolescents with intellectual disability in a geographically defined catchment area (West Essex) and to explore the pathways to care available to these adolescents and to their parents. Method: A cross sectional survey of adolescents aged 12-19 years old was undertaken. The participants were recruited from a wide range of specialist and community services. Structured interviews were conducted with adolescents and their carers and where possible their teachers. A social and health care proforma was also completed. Results: 75 adolescents were seen in total. The majority (42) had severe/profound intellectual disability. 24% had a history of epilepsy/seizures and 10% cerebral palsy. 50.7% (38/75) had a mental health problem as reported by parents but that increased to 66.7% (50/75) following a clinical assessment. The commonest ICD 10 diagnoses were conduct disorder (21.4%), atypical autism (16% ) and hyperkinetic disorder (14.7%). There was moderate agreement between parental reports and clinical diagnoses (kappa=0.51). Caseness was predicted by low levels of adaptive functioning, diagnosis of autism and family history of mental illness. Significant negative correlations were found between subdomain scores of the Vineland Adaptive Behaviour Scale and the Developmental Behaviour Checklist. In terms of service utilisation, the majority of the participants (94.7% of total sample) were in receipt of health and social care. Almost halt of all visits to General Practitioners in the past year were due to the parent seeking help for the young person's behavioural problem. 15% of the adolescents seen were receiving psychiatric medication. Conclusion: Prevalence rates for mental health problems in adolescents with intellectual disability are high. Adolescents with a diagnosis of autism and low level of adaptive skills appear to be more vulnerable in developing such disorders. Parents and primary health care providers will need targeted mental health promotion and education to recognise problems early and to seek specialist help. Services should co-ordinate their referral and assessment processes in order to meet current and future needs, particularly at the time of transition.