Quality of life and behavioural adjustment in childhood hydrocephalus.

The aim of the paper is to describe parent and teacher reported behavioural outcomes and quality of life in childhood hydrocephalus, and to consider the implications for future service planning. A community sample of 235 school-aged children with hydrocephalus (5-16 years) were identified via a database of service users, held by the Scottish Spina Bifida Association. Parent and teacher reports of behaviour on the Strengths and Difficulties Questionnaire (SDQ), and parent reports of quality of life on the Paediatric Quality-of-Life Generic Core (PedsQL Core) and Paediatric Quality-of-Life Fatigue (PedsQL Fatigue) were obtained, as were reports of service use and satisfaction.  In total, 35% (n = 76) of parents and 86% (n = 47) of teachers who were contacted participated in the study. Parents reported behavioural difficulties in 57% and teachers in 33% of children. Quality of life was significantly reduced in comparison to published norms. Children whose parents reported unmet needs had poorer psychosocial outcomes, but families rarely accessed appropriate specialist services. In conclusion, hydrocephalus is associated with high rates of behaviour problems and markedly reduced quality of life. It is important to increase professional awareness of psychological need in this chronic neurological condition, and to increase access to appropriate psychosocial services.