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Patient-Reported Outcomes for Pediatric Adherence and Self-Management: A Systematic Review
Jill M Plevinsky1, Ana M Gutierrez-Colina1, Julia K Carmody1
1Center for Adherence and Self-Management, Division of Behavioral Medicine and Clinical Psychology, Cincinnati Children's Hospital Medical Center.
Insights
Patient-reported outcomes (PROs) for pediatric treatment adherence and self-management are widely used but often lack rigorous psychometric validation. Further research is needed to improve these crucial measurement tools.
Area of Science:
- Pediatric Health
- Psychometrics
- Health Services Research
Background:
- Treatment adherence in pediatric populations is a significant challenge, with rates around 50%.
- Patient-reported outcomes (PROs) are commonly employed to assess adherence and self-management in clinical and research settings.
- Evaluating the psychometric properties of existing PROs is essential for reliable measurement.
Purpose of the Study:
- To systematically review and evaluate adherence and self-management PROs used in pediatric conditions.
- To assess measures of adherence behaviors, barriers, disease management skills, and treatment responsibility.
- To determine the psychometric quality of these PROs based on established criteria.
Main Methods:
- A systematic literature search was conducted following PRISMA guidelines.
- Fifty PROs for pediatric conditions were evaluated using Hunsley and Mash's (2018) criteria for evidence-based assessment.
- Psychometric domains assessed included reliability (internal consistency, interrater, test-retest), validity (content, construct, generalization), and treatment sensitivity.
Main Results:
- Most reviewed PROs demonstrated adequate content validity (n=44), internal consistency (n=34), and validity generalization (n=45).
- Results for interrater reliability, test-retest reliability, and treatment sensitivity were mixed.
- Fewer than half of the PROs (n=22) met criteria for adequate, good, or excellent construct validity.
Conclusions:
- While adherence and self-management PROs are prevalent in pediatrics, few meet high psychometric standards.
- There is a need for validation and replication studies using larger, diverse pediatric samples.
- Future research should explore emerging technologies to improve the implementation of PROs.
Objective:
Treatment adherence is approximately 50% across pediatric conditions. Patient-reported outcomes (PROs) are the most common method of measuring adherence and self-management across research and clinical contexts. The aim of this systematic review is to evaluate adherence and self-management PROs, including measures of adherence behaviors, adherence barriers, disease management skills, and treatment responsibility.
Methods:
Following PRISMA guidelines for systematic reviews, literature searches were performed. Measures meeting inclusion/exclusion criteria were evaluated using Hunsley and Mash's (2018) criteria for evidence-based assessment across several domains (e.g., internal consistency, interrater reliability, test-retest reliability, content validity, construct validity, validity generalization, treatment sensitivity, and clinical utility). Rating categories were adapted for the present study to include the original categories of adequate, good, and excellent, as well as an additional category of below adequate.
Results:
After screening 172 articles, 50 PROs across a variety of pediatric conditions were reviewed and evaluated. Most measures demonstrated at least adequate content validity (n = 44), internal consistency (n = 34), and validity generalization (n = 45). Findings were mixed regarding interrater reliability, test-retest reliability, and treatment sensitivity. Less than half of the measures (n = 22) exhibited adequate, good, or excellent construct validity.
Conclusions:
Although use of adherence and self-management PROs is widespread across several pediatric conditions, few PROs achieved good or excellent ratings based on rigorous psychometric standards. Validation and replication studies with larger, more diverse samples are needed. Future research should consider the use of emerging technologies to enhance the feasibility of broad implementation.
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