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Introducing a parent-centred composite disease activity score for remote monitoring in juvenile dermatomyositis

Letizia Tarantola1, Ana Isabel Rebollo-Giménez2, Alessia Sciutto3

  • 1Dipartimento di Neuroscienze, Riabilitazione, Oftalmologia, Genetica e Scienze Materno-Infantili (DiNOGMI), Università degli Studi di Genova, Genoa, Italy.

Rheumatology (Oxford, England)
|April 14, 2026
PubMed

Insights

A new parent-reported outcome score for juvenile dermatomyositis (JDM) called the parent JDM Activity Index (ParJDMAI) is effective and practical for clinical use. This tool can help monitor disease activity and potentially guide remote patient monitoring programs.

Area of Science:

  • Pediatric Rheumatology
  • Outcome Measurement
  • Patient-Reported Outcomes

Background:

  • Juvenile dermatomyositis (JDM) requires reliable disease activity assessment.
  • Current assessment tools may not fully capture the parent's perspective.
  • Parent-reported outcomes (PROs) offer valuable insights into a child's condition.

Purpose of the Study:

  • To develop and validate a composite disease activity score for JDM using only PROs.
  • To create a practical and efficient tool for routine clinical use.
  • To explore the potential of this score in remote patient monitoring.

Main Methods:

  • Developed the parent JDM Activity Index (ParJDMAI) using four PROs (global assessment, fatigue, muscle, and skin activity).
  • Scored each item on a 0-10 scale, yielding a total score of 0-40.
  • Validated the ParJDMAI on a multicenter sample of 254 JDM patients using OMERACT criteria.

Main Results:

  • The ParJDMAI is quick to complete (<10 min) and demonstrates good construct validity and internal consistency (Cronbach's alpha 0.86).
  • The index effectively discriminates between physician-assessed disease activity states (p<0.001) and shows fair responsiveness to change.
  • ParJDMAI scores correlated strongly with physician-centered disease activity measures.

Conclusions:

  • The ParJDMAI is a feasible tool with good measurement properties for assessing JDM disease activity.
  • It shows potential as a surrogate for physician evaluations.
  • Digital implementation of ParJDMAI could facilitate remote patient monitoring.
Abstract

Keywords:
composite disease activity scorejuvenile dermatomyositispaediatric rheumatologypatient-reported outcomesremote patient monitoring

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