Modified Delphi Study to Establish Consensus on an Australasian Minimum Data Set for Pediatric Stroke Rehabilitation

Area of Science:

• Pediatric Rehabilitation
• Neurology
• Clinical Research Methodology

Background:

• Childhood stroke requires standardized data collection for effective rehabilitation.
• Identifying key functional outcomes is crucial for survivors and their families.

Purpose of the Study:

• To develop a consensus-derived minimum data set for pediatric stroke.
• To establish agreed-upon tools for measuring key functional outcomes in childhood stroke survivors.

Main Methods:

• A modified Delphi process involving clinicians and families in Australia and New Zealand.
• Online focus groups identified important functional outcomes.
• Three survey rounds reached consensus on measures and time points for pediatric stroke rehabilitation.

Main Results:

• Consensus achieved on measures for 64% of preschool and 50% of school-aged functional outcomes.
• The Canadian Occupational Performance Measure was highly valued for its utility and flexibility.
• Lower consensus was reached for body function outcome measures.

Conclusions:

• Agreement on measurement tools for a minimum data set is a significant step in pediatric stroke research.
• These findings will improve future research and care for children with stroke.