Core Outcome Measures in Effectiveness Trials

Proposal for a Candidate Core Set of Fitness and Strength Tests for Patients with Childhood or Adult Idiopathic Inflammatory Myopathies

General Information

Abstract:
Objective.

Currently there are no evidence-based recommendations regarding fitness and strength tests for patients with childhood or adult idiopathic inflammatory myopathies (IIM). This hinders clinicians and researchers in choosing the appropriate fitness- or muscle strength-related outcome measures for these patients. Through a Delphi survey, we aimed to identify a candidate core set of fitness and strength tests for children and adults with IIM.

Methods.

Fifteen experts participated in a Delphi survey that consisted of 5 stages to achieve a consensus. Using an extensive search of published literature and through the work of experts, a candidate core set based on expert opinion and clinimetrics properties was developed. Members of the International Myositis Assessment and Clinical Studies Group were invited to review this candidate core set during the final stage, which led to a final candidate core set.

Results.

A core set of fitness- and strength-related outcome measures was identified for children and adults with IIM. For both children and adults, different tests were identified and selected for maximal aerobic fitness, submaximal aerobic fitness, anaerobic fitness, muscle strength tests, and muscle function tests.

Conclusion.

The core set of fitness- and strength-related outcome measures provided by this expert consensus process will assist practitioners and researchers in deciding which tests to use in patients with IIM. This will improve the uniformity of fitness and strength tests across studies, thereby facilitating the comparison of study results and therapeutic exercise program outcomes among patients with IIM.

Aim:
To identify a candidate core set of fitness and strength tests for children and adults with IIM.

Authors:
Djamilla K.D. van der Stap, Lisa G. Rider, Helene Alexanderson, Adam M. Huber, Bruno Gualano, Patrick Gordon, Janjaap van der Net, Pernille Mathiesen, Liam G. Johnson, Floranne C. Ernste, Brian M. Feldman, Kristin M. Houghton, Davinder Singh-Grewal, Abraham Garcia Kutzbach, Li Alemo Munters, Tim Takken, on behalf of the International Myositis Assessment and Clinical Studies Group, Luis Arboleya, Richard Barohn, Marco van Brussel, Hector Chinoy, Lorinda Chung, Robert Cooper, Mazen Dimachkie, Richard Finkel, Ignacio Garcia-De La Torre, Takahisa Gono, Thomas Griffin, Hidenaga Kawasumi, Raju Khubchandani, Ingrid Lundberg, Frank Mastaglia, Britta Maurer, Liza McCann, Merrille Needham, Marzena Olesinska, Nancy Olsen, Annet van Royen-Kerkhof, Lidia Rutkowska-Sak, Claudia Saad-Magalhaes, Adriana Sallum, Helga Sanner, Albert Selva-O’Callaghan, Clovis Silva, Vetrila Snejana, Yeong-Wook Song, Richard Vehe and Robert Wortmann

Publication

Journal:
The Journal of Rheumatology
Volume:
43
Issue:
1
Pages:
-
Year:
2016
DOI:
Further Study Information

Date:
Funding source(s):
Funding sponsor Acronym National Institute ofSponsor: Environmental Health Sciences (NIEHS). Supported in part by the Intramural Research Program of the National Institute of Environmental Health Sciences, US National Institutes of Health. We thank Minal Jain and Joseph Shrader for their critical review of the manuscript.

Health Area

Disease Category
Child health
Rheumatology

Disease Name
Idiopathic inflammatory myopathies (IIM)

Target Population

Age Range
0 - 100

Sex
Either


Nature / type of Intervention
Any

Method(s)

Delphi process

Stakeholders Involved

Unknown

Study Type

COS for clinical trials or clinical research
COS for practice

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