International consensus outcome measures for patient with idiopathic inflammatory myopathies. Development and initial validation of myositis activity and damage indices in patients with adult onset disease

D. A. Isenberg; E. Allen; V. Farewell; M. R. Ehrenstein; M. G. Hanna; I. E. Lundberg; C. Oddis; C. Pilkington; P. Plotz; D. Scott; J. Vencovsky; R. Cooper; L. Rider; F. Miller; Elizabeth Adams; Helene Alexanderson; Nancy Armentrout; Zohar Argov; Richard Barohn; Suzanne Bowyer; Hermine Brunner; Ruben Burgos-Vargas; Jeffrey Callen; Gail Cawkwell; Patrick Cherin; Yuen Li Chung; Hanna Chwalińska-Sadowska; Robert Cooper; Mary Cronin; Katarina Danko; Joyce Davidson; Peter Dent; Elizabeth Dugan; Brian Feldman; Richard Finkel; Ignacio Garcia de la Torre; Ekkehard Genth; Edward Giannini; Gerald Hengstman; Jeanne Hicks; Adam Huber; Hans Iko Huppertz; Lisa Imundo; Kent Johnson; Joseph Jorizzo; Lawrence Kagen; John Kissel; Marisa Klein-Gitelman; Abraham Garcia Kutzbach; Bianca Lang; Marissa Lassere; Carol Lindsley; Daniel Lovell; Sue Maillard; Peter Malleson; Alberto Martini; Thomas Medsger; Kevin Murray; Chester Oddis; Lauren Pachman; Amy Paller; Maria Perez; Paul Plotz; Dieter Pongratz; Angelo Ravelli; Ann Reed; Robert Rennebohm; Nicolino Ruperto; Seward Rutkove; Clyde Ryder; Jean Luc Senecal; Georges Serratrice; Jacques Serratrice; David Sherry; Kumaraswamy Sivakumar; Yeong Song; Richard Sontheimer; Ira Targoff; Maria Turner; Basiel van Engelen; Maria Villalba; Kelly Vincent; Victoria Werth; Patience White; James Witter; Robert Wortmann; Steven Ytterberg

doi:10.1093/rheumatology/keg427

International consensus outcome measures for patient with idiopathic inflammatory myopathies. Development and initial validation of myositis activity and damage indices in patients with adult onset disease

D. A. Isenberg, E. Allen, V. Farewell, M. R. Ehrenstein, M. G. Hanna, I. E. Lundberg, C. Oddis, C. Pilkington, P. Plotz, D. Scott, J. Vencovsky, R. Cooper, L. Rider, F. Miller, Elizabeth Adams, Helene Alexanderson, Nancy Armentrout, Zohar Argov, Richard Barohn, Suzanne BowyerHermine Brunner, Ruben Burgos-Vargas, Jeffrey Callen, Gail Cawkwell, Patrick Cherin, Yuen Li Chung, Hanna Chwalińska-Sadowska, Robert Cooper, Mary Cronin, Katarina Danko, Joyce Davidson, Peter Dent, Elizabeth Dugan, Brian Feldman, Richard Finkel, Ignacio Garcia de la Torre, Ekkehard Genth, Edward Giannini, Gerald Hengstman, Jeanne Hicks, Adam Huber, Hans Iko Huppertz, Lisa Imundo, Kent Johnson, Joseph Jorizzo, Lawrence Kagen, John Kissel, Marisa Klein-Gitelman, Abraham Garcia Kutzbach, Bianca Lang, Marissa Lassere, Carol Lindsley, Daniel Lovell, Sue Maillard, Peter Malleson, Alberto Martini, Thomas Medsger, Kevin Murray, Chester Oddis, Lauren Pachman, Amy Paller, Maria Perez, Paul Plotz, Dieter Pongratz, Angelo Ravelli, Ann Reed, Robert Rennebohm, Nicolino Ruperto, Seward Rutkove, Clyde Ryder, Jean Luc Senecal, Georges Serratrice, Jacques Serratrice, David Sherry, Kumaraswamy Sivakumar, Yeong Song, Richard Sontheimer, Ira Targoff, Maria Turner, Basiel van Engelen, Maria Villalba, Kelly Vincent, Victoria Werth, Patience White, James Witter, Robert Wortmann, Steven Ytterberg

Medicine

Research output: Contribution to journal › Article › peer-review

326 Citations (Scopus)

Abstract

Objective. To devise new tools to assess activity and damage in patients with idiopathic myopathies (IIM). Methods. An international multidisciplinary consensus effort to standardize the conduct and reporting of the myositis clinical trials has been established. Two tools, known as the myositis; intention to treat index (MITAX) and the myositis disease activity assessment visual analogue scale (MYOACT), have been developed to capture activity in patients with IIM. In addition, the myositis damage index (MDI) has been devised to assess the extent and severity of damage developing in different organs and systems. These measures have been reviewed by the myositis experts participating in the International Myositis Assessment and Clinical Studies (IMACS) group and have been found to have good face validity and to be comprehensive. The instruments were assessed in two real patient exercises involving patients with adult dermatomyositis and inclusion body myositis. Results. The reliability of MITAX, MIYOACT and MDI, measured by the intraclass correlation coefficient among the physicians, and the inter-rater reliability, as assessed by variation in the physicians' rating of patients, was fair to good for most aspects of the tools. Reliability and inter-rater agreement improved at the second exercise after the participants had completed additional training. Conclusions. The MITAX, MYOACT and MDI tools, which are now undergoing validity testing, should enhance the consistency, comprehensiveness and reliability of disease activity and damage assessment in patients with myositis.

Original language	English
Pages (from-to)	49-54
Number of pages	6
Journal	Rheumatology
Volume	43
Issue number	1
DOIs	https://doi.org/10.1093/rheumatology/keg427
Publication status	Published - Jan 2004

Bibliographical note

Funding Information:
We are grateful to the UK Myositis Support Group, whose support made the two workshops possible. JV was supported by the Czech Ministry of Health (No. 02378) and IEL was supported by Vardalstiftelsen and Swedish Rheumatism Association. We thank Drs Judy Beeler, Karen Farizo, Rachel Gafni, Ronald Gibson, Kristina Rother, Pamela Stratton and Glen Tamura for valuable input in defining the grading and glossary, and for assistance with specific items of the instruments within their areas of subspeciality expertise. We thank Drs Joan Mican and Robert Oglesby for critical reading of the manuscript.

ASJC Scopus Subject Areas

Rheumatology
Pharmacology (medical)

PubMed: MeSH publication types

Consensus Development Conference
Journal Article
Multicenter Study
Research Support, Non-U.S. Gov't
Review

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Isenberg, D. A., Allen, E., Farewell, V., Ehrenstein, M. R., Hanna, M. G., Lundberg, I. E., Oddis, C., Pilkington, C., Plotz, P., Scott, D., Vencovsky, J., Cooper, R., Rider, L., Miller, F., Adams, E., Alexanderson, H., Armentrout, N., Argov, Z., Barohn, R., ... Ytterberg, S. (2004). International consensus outcome measures for patient with idiopathic inflammatory myopathies. Development and initial validation of myositis activity and damage indices in patients with adult onset disease. Rheumatology, 43(1), 49-54. https://doi.org/10.1093/rheumatology/keg427

International consensus outcome measures for patient with idiopathic inflammatory myopathies. Development and initial validation of myositis activity and damage indices in patients with adult onset disease. / Isenberg, D. A.; Allen, E.; Farewell, V. et al.
In: Rheumatology, Vol. 43, No. 1, 01.2004, p. 49-54.

Research output: Contribution to journal › Article › peer-review

Isenberg, DA, Allen, E, Farewell, V, Ehrenstein, MR, Hanna, MG, Lundberg, IE, Oddis, C, Pilkington, C, Plotz, P, Scott, D, Vencovsky, J, Cooper, R, Rider, L, Miller, F, Adams, E, Alexanderson, H, Armentrout, N, Argov, Z, Barohn, R, Bowyer, S, Brunner, H, Burgos-Vargas, R, Callen, J, Cawkwell, G, Cherin, P, Chung, YL, Chwalińska-Sadowska, H, Cooper, R, Cronin, M, Danko, K, Davidson, J, Dent, P, Dugan, E, Feldman, B, Finkel, R, Garcia de la Torre, I, Genth, E, Giannini, E, Hengstman, G, Hicks, J, Huber, A, Huppertz, HI, Imundo, L, Johnson, K, Jorizzo, J, Kagen, L, Kissel, J, Klein-Gitelman, M, Garcia Kutzbach, A, Lang, B, Lassere, M, Lindsley, C, Lovell, D, Maillard, S, Malleson, P, Martini, A, Medsger, T, Murray, K, Oddis, C, Pachman, L, Paller, A, Perez, M, Plotz, P, Pongratz, D, Ravelli, A, Reed, A, Rennebohm, R, Ruperto, N, Rutkove, S, Ryder, C, Senecal, JL, Serratrice, G, Serratrice, J, Sherry, D, Sivakumar, K, Song, Y, Sontheimer, R, Targoff, I, Turner, M, van Engelen, B, Villalba, M, Vincent, K, Werth, V, White, P, Witter, J, Wortmann, R & Ytterberg, S 2004, 'International consensus outcome measures for patient with idiopathic inflammatory myopathies. Development and initial validation of myositis activity and damage indices in patients with adult onset disease', Rheumatology, vol. 43, no. 1, pp. 49-54. https://doi.org/10.1093/rheumatology/keg427

@article{7a565341b0314755bd38946df4be1bb8,

title = "International consensus outcome measures for patient with idiopathic inflammatory myopathies. Development and initial validation of myositis activity and damage indices in patients with adult onset disease",

abstract = "Objective. To devise new tools to assess activity and damage in patients with idiopathic myopathies (IIM). Methods. An international multidisciplinary consensus effort to standardize the conduct and reporting of the myositis clinical trials has been established. Two tools, known as the myositis; intention to treat index (MITAX) and the myositis disease activity assessment visual analogue scale (MYOACT), have been developed to capture activity in patients with IIM. In addition, the myositis damage index (MDI) has been devised to assess the extent and severity of damage developing in different organs and systems. These measures have been reviewed by the myositis experts participating in the International Myositis Assessment and Clinical Studies (IMACS) group and have been found to have good face validity and to be comprehensive. The instruments were assessed in two real patient exercises involving patients with adult dermatomyositis and inclusion body myositis. Results. The reliability of MITAX, MIYOACT and MDI, measured by the intraclass correlation coefficient among the physicians, and the inter-rater reliability, as assessed by variation in the physicians' rating of patients, was fair to good for most aspects of the tools. Reliability and inter-rater agreement improved at the second exercise after the participants had completed additional training. Conclusions. The MITAX, MYOACT and MDI tools, which are now undergoing validity testing, should enhance the consistency, comprehensiveness and reliability of disease activity and damage assessment in patients with myositis.",

author = "Isenberg, {D. A.} and E. Allen and V. Farewell and Ehrenstein, {M. R.} and Hanna, {M. G.} and Lundberg, {I. E.} and C. Oddis and C. Pilkington and P. Plotz and D. Scott and J. Vencovsky and R. Cooper and L. Rider and F. Miller and Elizabeth Adams and Helene Alexanderson and Nancy Armentrout and Zohar Argov and Richard Barohn and Suzanne Bowyer and Hermine Brunner and Ruben Burgos-Vargas and Jeffrey Callen and Gail Cawkwell and Patrick Cherin and Chung, {Yuen Li} and Hanna Chwali{\'n}ska-Sadowska and Robert Cooper and Mary Cronin and Katarina Danko and Joyce Davidson and Peter Dent and Elizabeth Dugan and Brian Feldman and Richard Finkel and {Garcia de la Torre}, Ignacio and Ekkehard Genth and Edward Giannini and Gerald Hengstman and Jeanne Hicks and Adam Huber and Huppertz, {Hans Iko} and Lisa Imundo and Kent Johnson and Joseph Jorizzo and Lawrence Kagen and John Kissel and Marisa Klein-Gitelman and {Garcia Kutzbach}, Abraham and Bianca Lang and Marissa Lassere and Carol Lindsley and Daniel Lovell and Sue Maillard and Peter Malleson and Alberto Martini and Thomas Medsger and Kevin Murray and Chester Oddis and Lauren Pachman and Amy Paller and Maria Perez and Paul Plotz and Dieter Pongratz and Angelo Ravelli and Ann Reed and Robert Rennebohm and Nicolino Ruperto and Seward Rutkove and Clyde Ryder and Senecal, {Jean Luc} and Georges Serratrice and Jacques Serratrice and David Sherry and Kumaraswamy Sivakumar and Yeong Song and Richard Sontheimer and Ira Targoff and Maria Turner and {van Engelen}, Basiel and Maria Villalba and Kelly Vincent and Victoria Werth and Patience White and James Witter and Robert Wortmann and Steven Ytterberg",

note = "Funding Information: We are grateful to the UK Myositis Support Group, whose support made the two workshops possible. JV was supported by the Czech Ministry of Health (No. 02378) and IEL was supported by Vardalstiftelsen and Swedish Rheumatism Association. We thank Drs Judy Beeler, Karen Farizo, Rachel Gafni, Ronald Gibson, Kristina Rother, Pamela Stratton and Glen Tamura for valuable input in defining the grading and glossary, and for assistance with specific items of the instruments within their areas of subspeciality expertise. We thank Drs Joan Mican and Robert Oglesby for critical reading of the manuscript.",

year = "2004",

month = jan,

doi = "10.1093/rheumatology/keg427",

language = "English",

volume = "43",

pages = "49--54",

journal = "Rheumatology",

issn = "1462-0324",

publisher = "Oxford University Press",

number = "1",

}

TY - JOUR

T1 - International consensus outcome measures for patient with idiopathic inflammatory myopathies. Development and initial validation of myositis activity and damage indices in patients with adult onset disease

AU - Isenberg, D. A.

AU - Allen, E.

AU - Farewell, V.

AU - Ehrenstein, M. R.

AU - Hanna, M. G.

AU - Lundberg, I. E.

AU - Oddis, C.

AU - Pilkington, C.

AU - Plotz, P.

AU - Scott, D.

AU - Vencovsky, J.

AU - Cooper, R.

AU - Rider, L.

AU - Miller, F.

AU - Adams, Elizabeth

AU - Alexanderson, Helene

AU - Armentrout, Nancy

AU - Argov, Zohar

AU - Barohn, Richard

AU - Bowyer, Suzanne

AU - Brunner, Hermine

AU - Burgos-Vargas, Ruben

AU - Callen, Jeffrey

AU - Cawkwell, Gail

AU - Cherin, Patrick

AU - Chung, Yuen Li

AU - Chwalińska-Sadowska, Hanna

AU - Cooper, Robert

AU - Cronin, Mary

AU - Danko, Katarina

AU - Davidson, Joyce

AU - Dent, Peter

AU - Dugan, Elizabeth

AU - Feldman, Brian

AU - Finkel, Richard

AU - Garcia de la Torre, Ignacio

AU - Genth, Ekkehard

AU - Giannini, Edward

AU - Hengstman, Gerald

AU - Hicks, Jeanne

AU - Huber, Adam

AU - Huppertz, Hans Iko

AU - Imundo, Lisa

AU - Johnson, Kent

AU - Jorizzo, Joseph

AU - Kagen, Lawrence

AU - Kissel, John

AU - Klein-Gitelman, Marisa

AU - Garcia Kutzbach, Abraham

AU - Lang, Bianca

AU - Lassere, Marissa

AU - Lindsley, Carol

AU - Lovell, Daniel

AU - Maillard, Sue

AU - Malleson, Peter

AU - Martini, Alberto

AU - Medsger, Thomas

AU - Murray, Kevin

AU - Oddis, Chester

AU - Pachman, Lauren

AU - Paller, Amy

AU - Perez, Maria

AU - Plotz, Paul

AU - Pongratz, Dieter

AU - Ravelli, Angelo

AU - Reed, Ann

AU - Rennebohm, Robert

AU - Ruperto, Nicolino

AU - Rutkove, Seward

AU - Ryder, Clyde

AU - Senecal, Jean Luc

AU - Serratrice, Georges

AU - Serratrice, Jacques

AU - Sherry, David

AU - Sivakumar, Kumaraswamy

AU - Song, Yeong

AU - Sontheimer, Richard

AU - Targoff, Ira

AU - Turner, Maria

AU - van Engelen, Basiel

AU - Villalba, Maria

AU - Vincent, Kelly

AU - Werth, Victoria

AU - White, Patience

AU - Witter, James

AU - Wortmann, Robert

AU - Ytterberg, Steven

N1 - Funding Information: We are grateful to the UK Myositis Support Group, whose support made the two workshops possible. JV was supported by the Czech Ministry of Health (No. 02378) and IEL was supported by Vardalstiftelsen and Swedish Rheumatism Association. We thank Drs Judy Beeler, Karen Farizo, Rachel Gafni, Ronald Gibson, Kristina Rother, Pamela Stratton and Glen Tamura for valuable input in defining the grading and glossary, and for assistance with specific items of the instruments within their areas of subspeciality expertise. We thank Drs Joan Mican and Robert Oglesby for critical reading of the manuscript.

PY - 2004/1

Y1 - 2004/1

N2 - Objective. To devise new tools to assess activity and damage in patients with idiopathic myopathies (IIM). Methods. An international multidisciplinary consensus effort to standardize the conduct and reporting of the myositis clinical trials has been established. Two tools, known as the myositis; intention to treat index (MITAX) and the myositis disease activity assessment visual analogue scale (MYOACT), have been developed to capture activity in patients with IIM. In addition, the myositis damage index (MDI) has been devised to assess the extent and severity of damage developing in different organs and systems. These measures have been reviewed by the myositis experts participating in the International Myositis Assessment and Clinical Studies (IMACS) group and have been found to have good face validity and to be comprehensive. The instruments were assessed in two real patient exercises involving patients with adult dermatomyositis and inclusion body myositis. Results. The reliability of MITAX, MIYOACT and MDI, measured by the intraclass correlation coefficient among the physicians, and the inter-rater reliability, as assessed by variation in the physicians' rating of patients, was fair to good for most aspects of the tools. Reliability and inter-rater agreement improved at the second exercise after the participants had completed additional training. Conclusions. The MITAX, MYOACT and MDI tools, which are now undergoing validity testing, should enhance the consistency, comprehensiveness and reliability of disease activity and damage assessment in patients with myositis.

AB - Objective. To devise new tools to assess activity and damage in patients with idiopathic myopathies (IIM). Methods. An international multidisciplinary consensus effort to standardize the conduct and reporting of the myositis clinical trials has been established. Two tools, known as the myositis; intention to treat index (MITAX) and the myositis disease activity assessment visual analogue scale (MYOACT), have been developed to capture activity in patients with IIM. In addition, the myositis damage index (MDI) has been devised to assess the extent and severity of damage developing in different organs and systems. These measures have been reviewed by the myositis experts participating in the International Myositis Assessment and Clinical Studies (IMACS) group and have been found to have good face validity and to be comprehensive. The instruments were assessed in two real patient exercises involving patients with adult dermatomyositis and inclusion body myositis. Results. The reliability of MITAX, MIYOACT and MDI, measured by the intraclass correlation coefficient among the physicians, and the inter-rater reliability, as assessed by variation in the physicians' rating of patients, was fair to good for most aspects of the tools. Reliability and inter-rater agreement improved at the second exercise after the participants had completed additional training. Conclusions. The MITAX, MYOACT and MDI tools, which are now undergoing validity testing, should enhance the consistency, comprehensiveness and reliability of disease activity and damage assessment in patients with myositis.

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International consensus outcome measures for patient with idiopathic inflammatory myopathies. Development and initial validation of myositis activity and damage indices in patients with adult onset disease

Abstract

Bibliographical note

ASJC Scopus Subject Areas

PubMed: MeSH publication types

Access to Document

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