Related Experiment Video
Updated: Jun 19, 2026

Measurements of Motor Function and Other Clinical Outcome Parameters in Ambulant Children with Duchenne Muscular Dystrophy
Published on: January 12, 2019
Developing outcome measures for paediatric rheumatic diseases
Hermine I Brunner1, Angelo Ravelli
1Cincinnati Children's Hospital Medical Center, University of Cincinnati, William Rowe Division of Rheumatology, Cincinnati, OH 45229-3039, USA. hermine.brunner@cchmc.org
Insights
This review outlines developing and validating outcome measures for pediatric rheumatic diseases. It details methods for creating reliable and valid assessment tools for conditions like juvenile idiopathic arthritis.
Area of Science:
- Rheumatology
- Pediatrics
- Health Outcomes Research
Background:
- Assessing pediatric rheumatic diseases requires robust outcome measures.
- Existing measures may not fully capture disease state and progression.
- Standardized tools are crucial for clinical trials and patient management.
Purpose of the Study:
- To provide a theoretical framework for developing outcome measures in pediatric rheumatic diseases.
- To review newly developed and validated outcome measures for these conditions.
- To guide researchers and clinicians in selecting and utilizing appropriate assessment tools.
Main Methods:
- Literature review of scale development methodologies.
- Description of item generation, reduction, reliability, and validation processes.
- Synthesis of newly developed outcome measures and their validation status.
Main Results:
- Detailed theoretical approach to outcome measure development.
- Overview of various outcome measures including disease activity scores, functional assessments, and quality of life tools.
- Discussion on the validation status of different measures for specific pediatric rheumatic diseases.
Conclusions:
- Standardized and validated outcome measures are essential for pediatric rheumatic diseases research and care.
- The review provides a comprehensive guide to developing and applying these measures.
- Further development and validation are ongoing for various disease-specific tools.
Abstract:
This review provides a theoretical background and approach for developing outcome measures that are often used to assess the state and course of paediatric rheumatic diseases. It describes the important steps in scale development such as item generation and reduction, the assessment of scale reliability and various forms of validation. The second part of this review described the newly developed outcome measures as well as their state of validation. These outcome measures include therapeutic response measures, composite disease activity scores for juvenile idiopathic arthritis (JIA), global disease activity tools for juvenile systemic lupus erythematosus and juvenile dermatomyositis, disease status measures in JIA, measures of physical function, measures of health-related quality of life, clinical measures of damage and radiographic scoring systems in JIA.
More Related Videos
Related Concept Videos
Rheumatic Heart Disease II: Clinical Manifestations and Diagnostic Studies
Guidelines for Writing Outcome
Patient outcomes reflect the patient's response to the goal rather than what the nurse aims to achieve. Terminology should be observable and measurable to avoid the reader's interpretation. The desired outcome should be realistic and achievable in the designated care timeframe. Expected outcomes should align with adjunctive therapies. The outcome should enhance care evaluation by...
Rheumatic Heart Disease IV: Nursing Management
Rheumatic Heart Disease III: Medical Management
Rheumatic Heart Disease I: Introduction
