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Health outcomes of pediatric rheumatic diseases

Nadia J C Luca1, Brian M Feldman2

  • 1Section of Rheumatology, Department of Paediatrics, University of Calgary and Alberta Children's Hospital, 2888 Shaganappi Trail NW, Calgary, AB T3B 6A8, Canada.

Best Practice & Research. Clinical Rheumatology
|June 30, 2014
PubMed

Insights

Measuring health outcomes in pediatric rheumatic diseases requires comprehensive tools assessing biological, physical, and psychosocial health. Ongoing research aims to refine these measures, especially patient-reported outcomes, for better clinical practice and research in childhood rheumatic conditions.

Area of Science:

  • Pediatric Rheumatology
  • Health Outcomes Research
  • Clinical Measurement

Background:

  • Assessing health outcomes is crucial for pediatric rheumatic diseases in clinical practice and research.
  • Health outcome measures must encompass biological, physical, and psychosocial dimensions.
  • Systematic development and rigorous evaluation (reliability, validity, responsiveness) are essential for measure implementation.

Purpose of the Study:

  • To review current health outcome measures for pediatric rheumatic diseases.
  • To highlight the importance of composite measures for disease activity.
  • To emphasize the growing need for patient-reported outcomes (PROs) and parent-reported outcomes (PAROs).

Main Methods:

  • Systematic review of existing literature on health outcome measures.
  • Identification of measures for specific conditions like juvenile idiopathic arthritis, juvenile systemic lupus erythematosus, and juvenile dermatomyositis.
  • Analysis of measurement properties and incorporation of patient/parent perspectives.

Main Results:

  • Several validated health outcome measures exist, including composite disease activity indices.
  • Tools for physical functioning and health-related quality of life are available.
  • There is a clear trend towards integrating patient-reported and parent-reported outcomes.

Conclusions:

  • Optimal health outcome measurement in pediatric rheumatology requires a multi-dimensional approach.
  • Further research is needed to establish the best methods for capturing patient perspectives.
  • Refined outcome measures will enhance clinical care and research for children with rheumatic diseases.

Keywords:
Consensus developmentCriteriaJuvenile dermatomyositisJuvenile idiopathic arthritisJuvenile systemic lupus erythematosusOutcome assessment

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