A special conditions register

Area of Science:

• Pediatric health surveillance
• Public health informatics
• Childhood disability epidemiology

Background:

• A special conditions register (SCR) has been operational in West Sussex since 1977, integrated with the child health system.
• The SCR aims to identify and track children with specific health conditions for various purposes.

Purpose of the Study:

• To describe the aims, organization, and utilization of the West Sussex SCR.
• To present examples of aggregated data obtainable from the SCR.
• To discuss the challenges in balancing individual care, service planning, and research needs for the register.

Main Methods:

• Utilized data from the West Sussex special conditions register (SCR) and child health system.
• Analyzed demographic and condition-specific data for children aged 0-17 in 1990.
• Conducted a validation study for diabetes mellitus registration accuracy.

Main Results:

• In 1990, 4.3% of 155,000 children (0-17 years) in West Sussex were on the SCR.
• Among registered children, 45.7% had mild/no physical disability, and 17.2% had moderate educational problems.
• Prevalence rates: severe hearing loss (1.7/1000 aged 5-17), diabetes mellitus (1.2/1000 aged 0-17).
• SCR validation for diabetes mellitus showed high accuracy (35/36 eligible children correctly registered).

Conclusions:

• The SCR effectively identifies children with various health conditions, including physical disabilities, educational problems, hearing loss, and diabetes.
• The register provides valuable aggregated data for service planning and epidemiological research.
• Maintaining the SCR requires balancing priorities for individual child care, service provision, and research objectives.