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Comparative Effectiveness Research and Children With Cerebral Palsy: Identifying a Conceptual Framework and
Mary E Gannotti1, Mary Law, Amy F Bailes
1Department of Physical Therapy (Dr Gannotti), College of Education, Nursing and Health Professions, University of Hartford, West Hartford, Connecticut; CanChild Centre for Childhood Disability Research (Drs Law and DiRezze, and Ms Williams) McMaster University, Hamilton, Ontario, Canada; Division of Occupational Therapy and Physical Therapy (Dr Bailes), Cincinnati Children's Hospital Medical Center and University of Cincinnati, Cincinnati, Ohio; Physical Therapy and Rehabilitation Sciences Department (Dr O'Neil), College of Nursing and Health Professions, Drexel University, Philadelphia, Pennsylvania.
Purpose:
A step toward advancing research about rehabilitation service associated with positive outcomes for children with cerebral palsy is consensus about a conceptual framework and measures.
Methods:
A Delphi process was used to establish consensus among clinicians and researchers in North America.
Results:
Directors of large pediatric rehabilitation centers, clinicians from large hospitals, and researchers with expertise in outcomes participated (N = 18). Andersen's model of health care utilization framed outcomes: consumer satisfaction, activity, participation, quality of life, and pain. Measures agreed upon included Participation and Environment Measure for Children and Youth, Measure of Processes of Care, PEDI-CAT, KIDSCREEN-10, PROMIS Pediatric Pain Interference Scale, Visual Analog Scale for pain intensity, PROMIS Global Health Short Form, Family Environment Scale, Family Support Scale, and functional classification levels for gross motor, manual ability, and communication.
Conclusions:
Universal forms for documenting service use are needed. Findings inform clinicians and researchers concerned with outcome assessment.
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