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Information technology in paediatric rheumatology.

Alessandro Consolaro1, Esi M Morgan2, Gabriella Giancane3

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New digital tools and registries are transforming paediatric rheumatology care. These advancements improve the collection and management of parent- and child-reported outcomes (PCROs), enhancing treatment effectiveness and patient satisfaction.

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Area of Science:

  • Paediatric rheumatology
  • Health informatics
  • Digital health

Background:

  • Information technology is rapidly advancing paediatric rheumatology.
  • Multidimensional questionnaires now integrate key parent- and child-reported outcomes (PCROs) for various conditions.
  • Existing tools aid in managing disease, tracking health changes, and assessing treatment efficacy.

Purpose of the Study:

  • To highlight recent developments in information technology for paediatric rheumatology.
  • To introduce new tools for comprehensive PCRO assessment and management.
  • To discuss the role of digital health in improving patient outcomes and data collection.

Main Methods:

  • Development and implementation of multidimensional questionnaires for juvenile idiopathic arthritis, juvenile dermatomyositis, and juvenile autoinflammatory diseases.
  • Establishment of the Pharmachild registry for long-term medication safety and effectiveness data collection.
  • Utilisation of the Patient-Reported Outcomes Measurement Information System (PROMIS) for advanced PCRO assessment.

Main Results:

  • New questionnaires effectively guide management, document health changes, and assess therapeutic interventions.
  • The Pharmachild registry collects prospective data on medication use in juvenile idiopathic arthritis.
  • PROMIS offers multidimensional measures for health-related quality of life (HRQL) and facilitates harmonisation between paediatric and adult assessments.

Conclusions:

  • Electronic questionnaires on smartphones and touch-screen devices will revolutionize data collection.
  • Digital tools foster regular PCRO collection in routine care.
  • These advancements promise to improve self-reported health data quality and ultimately enhance patient outcomes in paediatric rheumatology.