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Quality of life and behavioural adjustment in childhood hydrocephalus
R Sumpter1, L Dorris, G Brannan
1Fraser of Allander Neurosciences Unit, Royal Hospital for Sick Children, NHS Greater Glasgow & Clyde, Dalnair Street, Glasgow G3 8SJ, Scotland, UK.
Insights
Children with hydrocephalus often experience behavioral issues and a lower quality of life. Early identification and access to psychosocial services are crucial for improving outcomes in this chronic neurological condition.
Area of Science:
- Pediatric Neurology
- Developmental Psychology
- Quality of Life Research
Background:
- Childhood hydrocephalus is a chronic neurological condition requiring ongoing management.
- Behavioral outcomes and quality of life are critical indicators of well-being in affected children.
- Understanding these outcomes informs essential service planning and intervention strategies.
Purpose of the Study:
- To document parent and teacher-reported behavioral outcomes in children with hydrocephalus.
- To assess the quality of life experienced by school-aged children with hydrocephalus.
- To explore implications for future service planning and provision for this population.
Main Methods:
- A community sample of 235 school-aged children (5-16 years) with hydrocephalus was recruited.
- Parent and teacher reports on the Strengths and Difficulties Questionnaire (SDQ) assessed behavior.
- Parent reports on the Paediatric Quality-of-Life Generic Core (PedsQL Core) and PedsQL Fatigue measured quality of life.
Main Results:
- Parents reported behavioral difficulties in 57% of children; teachers reported them in 33%.
- Quality of life was significantly reduced compared to published norms.
- Children with unmet needs showed poorer psychosocial outcomes, despite limited access to specialist services.
Conclusions:
- Hydrocephalus is linked to substantial behavioral problems and diminished quality of life.
- Increased professional awareness of psychological needs in hydrocephalus is vital.
- Enhanced access to appropriate psychosocial services is necessary for affected children and families.
Abstract:
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.
