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The Use of Patient-Reported Outcome Measures in Developmental Age: A Complementary Tool for Pediatric Multiple
Paola Zaratin1, Maria Pia Amato2,3, Giampaolo Brichetto4
1Research Department, Italian Multiple Sclerosis Foundation, Genoa, Italy. paola.zaratin@aism.it.
Insights
Patient-reported outcome measures (PROMs) are crucial for accurately assessing pediatric multiple sclerosis (MS) burden. Integrating PROMs ensures patient-centered care and better disease management in children and adolescents.
Area of Science:
- Neurology
- Clinical Research
- Patient-Reported Outcomes
Background:
- Current pediatric multiple sclerosis (MS) assessments use adult-validated tools, potentially underestimating disease impact in younger populations.
- Subtle symptoms like fatigue and cognitive issues in pediatric MS are often underrecognized in routine clinical practice.
- Comprehensive pediatric MS evaluation necessitates integrating patient and caregiver perspectives for a holistic view of disease effects.
Purpose of the Study:
- To highlight the importance of patient-reported outcome measures (PROMs) for accurate pediatric MS assessment.
- To emphasize the need for patient-centered care and personalized disease management in pediatric MS.
- To summarize the current use of PROMs in pediatric MS and identify research and implementation gaps.
Main Methods:
- Review of current landscape of PROM use in pediatric multiple sclerosis (MS).
- Discussion of the PROMS Initiative's objectives for PROM development, validation, and implementation.
- Emphasis on criteria for optimal clinical utility: validity, reliability, responsiveness, standardization, and developmental appropriateness.
Main Results:
- Existing adult-centric outcome measures may lack sensitivity and specificity for pediatric MS.
- PROMs offer a patient-centered approach, improving clinical decision-making and disease management.
- PROMs can provide insights into long-term health and predict adult outcomes.
Conclusions:
- Patient-reported outcome measures (PROMs) are essential for a comprehensive and accurate assessment of pediatric multiple sclerosis (MS).
- Standardized, developmentally appropriate PROMs are needed to optimize clinical utility and guide research.
- The PROMS Initiative aims to facilitate global integration of PROMs in pediatric MS research and care.
Abstract:
In pediatric multiple sclerosis (MS), assessment of disease burden predominantly relies on outcome measures developed and validated in adult populations. The application of these tools to children and adolescents may compromise sensitivity and specificity, potentially resulting in an underestimation of disease impact. Symptoms such as fatigue, mood disorders, and cognitive impairment may present subtly in younger patients and are therefore prone to underrecognition in routine clinical practice. Comprehensive evaluation of pediatric MS requires integration of the perspectives of both patients and their caregivers to fully capture the multidimensional effects of the disease, including psychosocial and functional consequences. Incorporation of patient-reported outcome measures (PROMs) into routine clinical care enables a more patient-centered assessment and supports informed clinical decision-making and personalized disease management. Furthermore, PROMs may provide insight into long-term health trajectories and help identify early predictors of adult outcomes. In recognition of the need for a coordinated global approach, the PROMS Initiative was established in 2019 to promote the development, validation, and implementation of PROMs in both research and clinical settings. Its objectives include facilitating the integration of PROMs into clinical trials, routine care, and regulatory frameworks across adult and pediatric populations. To optimize clinical utility, PROMs should demonstrate validity, reliability, and responsiveness, and their use should be standardized while remaining developmentally appropriate and tailored to age and disease stage. This article summarizes the current landscape of PROM use in pediatric MS and highlights key gaps to guide future research and clinical implementation.
