Peer-reviewed article
Outcome measures in paediatric rheumatology: an exploratory international health professional perspective on current practice and future priorities from the ComPaS-HP initiative
Nilay Arman, Mette Nørgaard, Lea Höfel, Rafael Prieto‐Moreno, Asena Yekdaneh et al. ·
Summary
Written by AI, not yet AICS's view · claude-sonnet-5-5This exploratory online survey asked 47 health professionals from 12 countries in Europe and North America how they measure outcomes for children with rheumatic diseases. Most respondents were physiotherapists and nurses. They preferred short, familiar and practical tools, such as pain scales, the CHAQ/MD-CHAQ questionnaire, active joint counts and school attendance records. Lack of time and the burden on patients were the main barriers, while short child-friendly tools and clear guidance helped. The authors do not propose a core set of measures but suggest priorities to inform later, more representative consensus work.
Key points
- 47 respondents from 12 countries took part; 66% were physiotherapists and 23.4% nurses.
- The 11-point Numeric Rating Scale was used always or often by 66.0% of respondents.
- CHAQ/MD-CHAQ was used always or often by 61.7%; active joint count and school attendance/participation records by 55.3% each.
- The most frequent barriers were time constraints (72.3%) and patient burden (46.8%).
- The strongest facilitators were short and child-friendly tools (76.6%) and clear guidance or standardised protocols (51.1%).
Limitations
The survey was small, used convenience sampling and was dominated by physiotherapists and nurses, so it does not represent international practice. It reflects health professionals' reported practice and preferences, not children's or families' views or any outcomes for children.
Abstract
Abstract Background Outcome measurement in paediatric rheumatology extends beyond inflammatory disease activity to assess fatigue, pain, physical function, psychosocial well-being, and quality of life. Despite the available multiple assessment instruments, their clinical use remains inconsistent across health professions and care settings, limiting comparability. This exploratory international survey aimed to describe current outcome measurement practices among Health Professionals (HPs) working in paediatric rheumatology, identify commonly used and prioritised measures, and explore implementation challenges. It was conducted as part of the Core Outcome Measures work in Paediatric Rheumatology, Shaped by Health Professionals (ComPaS-HP) Initiative. Methods An anonymous international online survey was circulated to the Pediatric Rheumatology European Society (PReS) HPs community, existing paediatric rheumatology HP contacts, HP WhatsApp groups, and congress-related communication channels. HPs working with children and adolescents with rheumatic diseases reported upon current outcome measurement practices, perceived priorities, and implementation challenges. The survey was intended as an exploratory, practice-informed consultation rather than as a representative international survey. Results The survey was completed by 47 respondents from 12 countries across Europe and North America. Respondents were mainly physiotherapists ( n = 31, 66%) and nurses ( n = 11, 23.4%), with psychology, physiology, dietetics, occupational therapy, and epidemiology each represented by one respondent. Across domains, respondents favoured brief, familiar, and clinically practical tools. In routine practice, the strongest preferences were observed for pain scales, the Childhood Health Assessment Questionnaire / Multidimensional Childhood Health Assessment Questionnaire (CHAQ/MD-CHAQ), active joint count, morning stiffness duration, and school participation indicators. The 11-point Numeric Rating Scale was reported as used always or often by 66.0% of respondents, CHAQ/MD-CHAQ by 61.7%, active joint count by 55.3%, and school attendance/participation records by 55.3%. The most frequently reported barriers were time constraints (72.3%) and patient burden (46.8%), whereas the strongest facilitators were short and child-friendly tools (76.6%) and clear guidance or standardised protocols (51.1%). Conclusions These exploratory findings suggest a pragmatic, layered approach to outcome measurement in paediatric rheumatology. Rather than proposing a core set, this exploratory phase identifies practice-informed priorities and implementation-relevant signals that may inform future, more representative consensus-building work within the ComPaS-HP Initiative.