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Can routine information systems be used to monitor serious disability?
Insights
Child health information systems do not yet provide reliable data for tracking disabling conditions in early childhood. Improved data collection and collation are needed to accurately monitor childhood disability prevalence.
Area of Science:
- Public Health
- Pediatrics
- Health Informatics
Background:
- Child health information systems (CHIS) are crucial for monitoring population health.
- Accurate prevalence rates of childhood disabilities are essential for resource allocation and intervention planning.
Purpose of the Study:
- To evaluate the reliability of child health information systems in capturing birth cohort prevalence rates of disabling conditions in early childhood.
- To compare CHIS data with a population register for identifying motor and sensory disabilities.
Main Methods:
- A comparative study was conducted in Oxfordshire, Buckinghamshire, and Northamptonshire.
- Data from CHIS were compared with a multi-source population register for children born between 1984 and 1989.
- Prevalence rates of motor and sensory disabilities were analyzed.
Main Results:
- CHIS identified 6.0/1000 live births with disabilities, while the population register identified 4.2/1000.
- Only 284 children (out of 820 and 580 identified by each source, respectively) were consistently identified by both systems.
- Significant discrepancies highlight data underestimation and duplication issues.
Conclusions:
- Current CHIS are insufficient for reliable monitoring of childhood disability prevalence trends.
- Standardization in data collection, recording, and collation is necessary to enhance the utility of CHIS for disability surveillance.
- Further research and system improvements are required to accurately track childhood disabling conditions.
Objective:
To determine whether reliable birth cohort prevalence rates of disabling conditions in early childhood can be obtained from child health information systems.
Design:
Comparison of two sources of information on motor and sensory disabilities: from child health information systems held by health authorities, and a population register that uses multiple sources of ascertainment.
Setting:
The counties of Oxfordshire, Buckinghamshire, and Northamptonshire.
Participants:
Children born to residents of the three counties between 1984 and 1989.
Results:
Eight hundred and twenty children (6.0/1000 live births) were identified from the child health system as having one or more of the conditions, and 580 (4.2/1000 live births) were identified from the population register; however, only 284 children were identified by both sources.
Conclusions:
It is currently impossible to monitor trends in the prevalence rate of disabling disorders in childhood using the child health information systems. Agreement about ways of collecting, recording, and collating information on disability would be a useful step towards realising the full potential of these systems.
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