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Quantifying multifaceted needs captured at the point of care. Development of a Disabilities Terminology Set and
Karen A Horridge1, Carl Harvey1, Kenneth McGarry2
1City Hospitals Sunderland NHS Foundation Trust, Sunderland.
Insights
A new Disabilities Terminology Set was developed to quantify the needs of disabled children. Children with multiple complex conditions, such as intellectual disabilities, cerebral palsy, and epilepsy, experience a higher burden of needs.
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.
Aims:
To develop a Disabilities Terminology Set and quantify the multifaceted needs of disabled children and their families in a district disability clinic population.
Method:
Data from structured electronic clinic letters of children attending paediatric disability clinics from June 2007 to May 2012 in Sunderland, north-east England collected at the point of clinical care were analysed to determine appropriate terms for consistent recording of each need and issue. Terms were collated to count the number of needs per child.
Results:
A Systemized Nomenclature of Medicine - Clinical Terms subset of 296 terms was identified and published, and 8392 consultations for 1999 children were reviewed. The required number of clinic appointments correlated strongly with the number of needs identified. Children with intellectual disabilities in addition to cerebral palsy and epilepsy had more than double the number of conditions, technology dependencies, and family-reported issues than those without. Disabled children who subsequently died had the highest burden of needs (p=0.007).
Interpretation:
Detailed data about needs generated outputs useful for local care pathway development and service planning. Sufficient evidence was provided for successful business cases leading to the appointment of additional paediatric disability consultants. Counting numbers of needs and issues quantifies complexity in a straightforward way. This could underpin needs-based commissioning of services.
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