Representation of child and youth participation within the Unified Medical Language System (UMLS)

Purpose

To examine (1) how much participation is represented in the benchmark Unified Medical Language System (UMLS) resource, and (2) to what extent that representation reflects the definition of child and youth participation and/or its related constructs per the family of Participation-Related Constructs framework.

Materials and methods

We searched and analysed UMLS concepts related to the term “participation.” Identified UMLS concepts were rated according to their representation of participation (i.e., attendance, involvement, both) as well as participation-related constructs using deductive content analysis.

Results

363 UMLS concepts were identified. Of those, 68 had at least one English definition, resulting in 81 definitions that were further analysed. Results revealed 2 definitions (2/81; 3%; 2/68 UMLS concepts) representing participation “attendance” and 18 definitions (18/81; 22%; 14/68 UMLS concepts) representing participation “involvement.” No UMLS concept definition represented both attendance and involvement (i.e., participation). Most of the definitions (11/20; 55%; 9/16 UMLS concepts) representing attendance or involvement also represent a participation-related construct.

Conclusion(s)

The representation of participation within the UMLS is limited and poorly aligned with the contemporary definition of child and youth participation. Expanding ontological resources to represent child and youth participation is needed to enable better data analytics that reflect contemporary paediatric rehabilitation practice.

IMPLICATIONS FOR REHABILITATION

The representation of participation within the Unified Medical Language System (UMLS) is limited and poorly aligned with the contemporary definition of child and youth participation.

From a contemporary paediatric rehabilitation perspective, using the current UMLS concepts for data analytics might result in misrepresentation of child and youth participation.

There is need to expand ontological resources within the UMLS to fully and exclusively represent participation dimensions (attendance and involvement) in daily life activities to enable better data analytics that reflect contemporary paediatric rehabilitation practice.