- Poster presentation
- Open Access
PReS-FINAL-2012: Introducing a new approach to clinical care of juvenile dermatomyositis: the juvenile dermatomyositis multidimensional assessment report
© Varnier et al.; licensee BioMed Central Ltd. 2013
- Published: 5 December 2013
- Clinical Care
- Pediatric Rheumatology
- Illness Outcome
- Juvenile Dermatomyositis
In recent years, there has been an increasing interest in parent/child-reported outcomes (pcros) in pediatric rheumatology practice. Incorporation of these measures in patient assessment is deemed important as they reflect the parents' and children's perception of the disease course and the effectiveness of therapeutic interventions. Although several measures of single pcros have been developed, to date a clinical measure that groups all pcros used in the assessment of children with juvenile dermatomyositis (JDM) does not exist. Such measure would provide a physician with a thorough and systematic overview of the patient status to be scanned at the start of the visit. This would facilitate focus on matters that require attention, leading to more efficient and effective clinical care.
To develop and test a new multidimensional questionnaire incorporating all main pcros to be used in the assessment of children with JDM in standard clinical care.
The Juvenile Dermatomyositis Multidimensional Assessment Report (JDMAR) includes 15 parent/child-centered measures that assess well-being, pain, functional status, health-related quality of life, fatigue, disease activity, disease status and course, disease manifestations, side effects of medications, therapeutic compliance, problems at school, and satisfaction with illness outcome. The JDMAR is proposed for use as both proxy-report and patient self-report, with the suggested age range of 7-18 years for use as self-report.
JDMAR assessments On a 10-cm VAS
No. Positive (%)
Others JDMAR assessments
No. Positive (%)
Normal functional ability
Normal HRQL - Total score
No disease activity
Satisfied with illness outcome
Development of the JDMAR provides a promising approach to quantitative measurement in standard pediatric rheumatology care. Availability of this new instrument may foster regular use of parent/patient questionnaires in routine practice and contribute to improved quality of care of children with JDMAR.
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