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  • Invited speaker presentation
  • Open Access

PReS13-SPK-1582: Activity and damage - we have to measure them

  • 1
Pediatric Rheumatology201311(Suppl 2):I23

https://doi.org/10.1186/1546-0096-11-S2-I23

Published: 5 December 2013

Keywords

  • Public Health
  • Clinical Trial
  • Clinical Practice
  • Clinical Care
  • Subjective Assessment

"You can't manage what you don't measure."

The world community--led by the IMACS and PRINTO groups--has developed robust core criteria to measure disease activity and damage for Juvenile Dermatomyositis studies. These measures are tremendously useful in clinical practice, and not just for research.

More problematic has been determining clinically meaningful change. The current definitions of change may not be adequate for clinical trials. Problems include mathematical theoretical ones (e.g. using percent [relative] change for non-ratio measures, and trying to calculate continuous scores from ordinal measures), and practical ones (not incorporating patients' subjective assessments properly).

Proper measures have an important place in the clinical care of children with dermatomyositis; we have made a very strong start, but there is still work to do.

"You can't manage what you don't measure."

The world community--led by the IMACS and PRINTO groups--has developed robust core criteria to measure disease activity and damage for Juvenile Dermatomyositis studies. These measures are tremendously useful in clinical practice, and not just for research.

More problematic has been determining clinically meaningful change. The current definitions of change may not be adequate for clinical trials. Problems include mathematical theoretical ones (e.g. using percent [relative] change for non-ratio measures, and trying to calculate continuous scores from ordinal measures), and practical ones (not incorporating patients' subjective assessments properly).

Proper measures have an important place in the clinical care of children with dermatomyositis; we have made a very strong start, but there is still work to do.

Disclosure of interest

None declared.

Authors’ Affiliations

(1)
Pediatrics, Hospital For Sick Children, Toronto, Canada

Copyright

© Feldman; licensee BioMed Central Ltd. 2013

This article is published under license to BioMed Central Ltd. This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/2.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.

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