Quantifying multifaceted needs captured at the point of care. Development of a Disabilities Terminology Set and...

Area of Science:

• Pediatric Medicine
• Disability Studies
• Health Informatics

Background:

• Quantifying the needs of disabled children is crucial for effective service planning.
• Existing terminology may not adequately capture the multifaceted requirements of this population.
• District disability clinics serve a diverse group of children with varying complexities of need.

Purpose of the Study:

• To develop a standardized Disabilities Terminology Set.
• To quantify the multifaceted needs of disabled children and their families.
• To inform local care pathway development and service planning.

Main Methods:

• Analysis of structured electronic clinic letters from paediatric disability clinics (June 2007 - May 2012).
• Development of a 296-term subset from Systemized Nomenclature of Medicine - Clinical Terms.
• Review of 8392 consultations for 1999 children to count needs per child.

Main Results:

• A 296-term Disabilities Terminology Set was identified and published.
• The number of clinic appointments strongly correlated with the identified number of needs.
• Children with intellectual disabilities, cerebral palsy, and epilepsy had significantly more needs and issues.

Conclusions:

• Counting needs and issues provides a straightforward method to quantify complexity.
• This approach can support needs-based commissioning of services.
• Data generated can inform service planning and justify resource allocation, such as additional consultants.