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Outcome measures in pediatric neurology: why do we need them?
G M Ronen1, M P Rosenbaum, D L Streiner
1Department of Pediatrics, McMaster University, Hamilton, ON, Canada. roneng@fhs.mcmaster.ca
Journal of Child Neurology
|February 24, 2001
Summary
Outcome measures should incorporate patient values and preferences alongside clinical data. This approach enhances understanding of intervention effectiveness and disease burden, particularly for pediatric neurodevelopmental disorders.
Area of Science:
- Health Outcomes Research
- Pediatric Medicine
- Quality of Life Assessment
Background:
- Outcome measures are crucial for evaluating healthcare services and interventions.
- Current measures often focus on performance and physiologic states, potentially neglecting patient perspectives.
- Health-related quality of life (HRQoL) is an important dimension of patient outcomes.
Purpose of the Study:
- To highlight the importance of including patient values and preferences in outcome measures.
- To discuss the utility and properties of various outcome measures.
- To emphasize the feasibility and application of outcome measures in pediatric populations.
Main Methods:
- Review of the concept and types of outcome measures.
- Discussion of their application in assessing interventions and disease burdens.
- Highlighting recent research on feasibility in pediatric neurodevelopmental disorders.
Main Results:
- Outcome measures can assess the relationship between interventions and results.
- They help identify effective therapies and those needing further evidence.
- Feasibility of using outcome measures in children with neurodevelopmental disorders has been demonstrated.
Conclusions:
- Clinicians should understand outcome measures and HRQoL to select appropriate instruments.
- Incorporating patient-reported outcomes is essential for comprehensive assessment.
- Ongoing research applies these measures across various pediatric conditions, including CNS tumors and epilepsy.