Disease Damage includes persistent changes in anatomy, physiology, pathology or function which result from previously active disease and from complications of therapy or other events. Changes associated with damage are often post-inflammatory, cumulative and irreversible. IMACS has developed a consensus that damage should be present at least 6 months despite prior immunosuppressive, rehabilitation or other therapies. The preliminary core set measures to assess myositis damage are described below. Tools and additional educational resources are available to IMACS members. Please log in to view this material.
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These myositis damage measures, as well as their validation, and performance characteristics, have been reviewed in the following article:
- Rider LG, Werth VP, Huber AM, Alexanderson H, Rao AP, Ruperto N, Herbelin L, Barohn R, Isenberg D, Miller FW. Measures of adult and juvenile dermatomyositis, polymyositis, and inclusion body myositis: Physician and Patient/Parent Global Activity, Manual Muscle Testing (MMT), Health Assessment Questionnaire (HAQ)/Childhood Health Assessment Questionnaire (C-HAQ), Childhood Myositis Assessment Scale (CMAS), Myositis Disease Activity Assessment Tool (MDAAT), Disease Activity Score (DAS), Short Form 36 (SF-36), Child Health Questionnaire (CHQ), physician global damage, Myositis Damage Index (MDI), Quantitative Muscle Testing (QMT), Myositis Functional Index-2 (FI-2), Myositis Activities Profile (MAP), Inclusion Body Myositis Functional Rating Scale (IBMFRS), Cutaneous Dermatomyositis Disease Area and Severity Index (CDASI), Cutaneous Assessment Tool (CAT), Dermatomyositis Skin Severity Index (DSSI), Skindex, and Dermatology Life Quality Index (DLQI). Arthritis Care Res (Hoboken). 2011 Nov;63 Suppl 11:S118-57. doi: 10.1002/acr.20532. Review. [Abstract Rider LG, Werth VP, Huber AM, Alexanderson H, Rao AP, Ruperto N, Herbelin L, Barohn R, Isenberg D, Miller FW. Measures of adult and juvenile dermatomyositis, polymyositis, and inclusion body myositis: Physician and Patient/Parent Global Activity, Manual Muscle Testing (MMT), Health Assessment Questionnaire (HAQ)/Childhood Health Assessment Questionnaire (C-HAQ), Childhood Myositis Assessment Scale (CMAS), Myositis Disease Activity Assessment Tool (MDAAT), Disease Activity Score (DAS), Short Form 36 (SF-36), Child Health Questionnaire (CHQ), physician global damage, Myositis Damage Index (MDI), Quantitative Muscle Testing (QMT), Myositis Functional Index-2 (FI-2), Myositis Activities Profile (MAP), Inclusion Body Myositis Functional Rating Scale (IBMFRS), Cutaneous Dermatomyositis Disease Area and Severity Index (CDASI), Cutaneous Assessment Tool (CAT), Dermatomyositis Skin Severity Index (DSSI), Skindex, and Dermatology Life Quality Index (DLQI). Arthritis Care Res (Hoboken). 2011 Nov;63 Suppl 11:S118-57. doi: 10.1002/acr.20532. Review.]
The IMACS Outcomes Repository Variable List is a data dictionary of the variable names used in the IMACS Outcomes Repository. It is published here to facilitate data sharing of core set measure data.
Myositis Disease Damage Index (MDI)
Description:
This validated tool assesses the degree of disease damage of all organ systems. It is composed of a series of organ-specific questions relating to the presence or absence of a given sign or symptom or problem to measure the extent of damage, and an overall rating of the disease damage of each system using a 10 cm. visual analogue scale to measure the severity of damage.
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References:
- Rider LG, Lachenbruch PA, Monroe JB, Ravelli A, Cabalar I, Feldman BM, Villalba ML, Myones BL, Pachman LM, Rennebohm RM, Reed AM, Miller FW; IMACS Group. Damage extent and predictors in adult and juvenile dermatomyositis and polymyositis as determined with the myositis damage index. Arthritis Rheum. 2009 Nov;60(11):3425-35. [Pub Med Rider LG, Lachenbruch PA, Monroe JB, Ravelli A, Cabalar I, Feldman BM, Villalba ML, Myones BL, Pachman LM, Rennebohm RM, Reed AM, Miller FW; IMACS Group. Damage extent and predictors in adult and juvenile dermatomyositis and polymyositis as determined with the myositis damage index. Arthritis Rheum. 2009 Nov;60(11):3425-35.]
This is the primary publication of the final version of the Myositis Damage Index. Please seek permission to use from the publisher and authors.
- 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; International Myositis and Clinical Studies Group (IMACS). International consensus outcome measures for patients with idiopathic inflammatory myopathies. Development and initial validation of myositis activity and damage indices in patients with adult onset disease. Rheumatology (Oxford). 2004 Jan;43(1):49-54. Epub 2003 Jul 16. [Pub Med 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; International Myositis and Clinical Studies Group (IMACS). International consensus outcome measures for patients with idiopathic inflammatory myopathies. Development and initial validation of myositis activity and damage indices in patients with adult onset disease. Rheumatology (Oxford). 2004 Jan;43(1):49-54. Epub 2003 Jul 16.]
First version of Myositis Damage Index, but gives background on the tool and its development. Please seek permission to use from the publisher and authors.
- Sultan SM, Allen E, Cooper RG, Agarwal S, Kiely P, Oddis CV, Vencovsky J, Lundberg IE, Dastmalchi M, Hanna MG, Isenberg DA; Interrater reliability and aspects of validity of the myositis damage index. Ann Rheum Dis. 2011 Jul;70(7):1272-6. [Pub Med Sultan SM, Allen E, Cooper RG, Agarwal S, Kiely P, Oddis CV, Vencovsky J, Lundberg IE, Dastmalchi M, Hanna MG, Isenberg DA; Interrater reliability and aspects of validity of the myositis damage index. Ann Rheum Dis. 2011 Jul;70(7):1272-6.]
- Sanner H, Gran JT, Sjaastad I, Flatø B; Division Rikshospitalet, Medical Faculty, University of Oslo Oslo University Hospital, Rikshospitalet, Oslo, Norway. Cumulative organ damage and prognostic factors in juvenile dermatomyositis: a cross-sectional study median 16.8 years after symptom onset. Rheumatology (Oxford). 2009 Dec;48(12):1541-7. [Pub Med Sanner H, Gran JT, Sjaastad I, Flatø B; Division Rikshospitalet, Medical Faculty, University of Oslo Oslo University Hospital, Rikshospitalet, Oslo, Norway. Cumulative organ damage and prognostic factors in juvenile dermatomyositis: a cross-sectional study median 16.8 years after symptom onset. Rheumatology (Oxford). 2009 Dec;48(12):1541-7.]
- Ravelli A, Trail L, Ferrari C, Ruperto N, Pistorio A, Pilkington C, Maillard S, Oliveira SK, Sztajnbok F, Cuttica R, Beltramelli M, Corona F, Katsicas MM, Russo R, Ferriani V, Burgos-Vargas R, Magni-Manzoni S, Solis-Valleoj E, Bandeira M, Zulian F, Baca V, Cortis E, Falcini F, Alessio M, Alpigiani MG, Gerloni V, Saad-Magalhaes C, Podda R, Silva CA, Lepore L, Felici E, Rossi F, Sala E, Martini A; Long-term outcome and prognostic factors of juvenile dermatomyositis: a multinational, multicenter study of 490 patients. Arthritis Care Res (Hoboken). 2010 Jan 15;62(1):63-72.PMID: 20191492 [Pub Med Ravelli A, Trail L, Ferrari C, Ruperto N, Pistorio A, Pilkington C, Maillard S, Oliveira SK, Sztajnbok F, Cuttica R, Beltramelli M, Corona F, Katsicas MM, Russo R, Ferriani V, Burgos-Vargas R, Magni-Manzoni S, Solis-Valleoj E, Bandeira M, Zulian F, Baca V, Cortis E, Falcini F, Alessio M, Alpigiani MG, Gerloni V, Saad-Magalhaes C, Podda R, Silva CA, Lepore L, Felici E, Rossi F, Sala E, Martini A; Long-term outcome and prognostic factors of juvenile dermatomyositis: a multinational, multicenter study of 490 patients. Arthritis Care Res (Hoboken). 2010 Jan 15;62(1):63-72.PMID: 20191492]
Physician Global Assessment of Disease Damage
Description:
This partially validated tool measures the global evaluation by the treating physician of the overall disease damage of the patient at the time of assessment using a 10 cm. visual analogue scale and a 5 point Likert scale.
Download:
Reference:
- Rider LG, Feldman BM, Perez MD, Rennebohm RM, Lindsley CB, Zemel LS, Wallace CA, Ballinger SH, Bowyer SL, Reed AM, Passo MH, Katona IM, Miller FW, Lachenbruch PA. Development of validated disease activity and damage indices for the juvenile idiopathic inflammatory myopathies: I. Physician, parent, and patient global assessments. Juvenile Dermatomyositis Disease Activity Collaborative Study Group. Arthritis Rheum. 1997 Nov;40(11):1976-83. [Pub Med Rider LG, Feldman BM, Perez MD, Rennebohm RM, Lindsley CB, Zemel LS, Wallace CA, Ballinger SH, Bowyer SL, Reed AM, Passo MH, Katona IM, Miller FW, Lachenbruch PA. Development of validated disease activity and damage indices for the juvenile idiopathic inflammatory myopathies: I. Physician, parent, and patient global assessments. Juvenile Dermatomyositis Disease Activity Collaborative Study Group. Arthritis Rheum. 1997 Nov;40(11):1976-83.]
This is the primary publication of this tool. Please seek permission to use from the publisher and authors.
Patient/Parent Global Assessment of Disease Damage
Description:
This partially validated tool measures the global evaluation by the patient, or by the parent if the patient is a minor, of the patient's overall disease damage at the time of assessment using a 10 cm. visual analogue scale.
Download
Reference:
- Rider LG, Feldman BM, Perez MD, Rennebohm RM, Lindsley CB, Zemel LS, Wallace CA, Ballinger SH, Bowyer SL, Reed AM, Passo MH, Katona IM, Miller FW, Lachenbruch PA. Development of validated disease activity and damage indices for the juvenile idiopathic inflammatory myopathies: I. Physician, parent, and patient global assessments. Juvenile Dermatomyositis Disease Activity Collaborative Study Group. Arthritis Rheum. 1997 Nov;40(11):1976-83. [Pub Med Rider LG, Feldman BM, Perez MD, Rennebohm RM, Lindsley CB, Zemel LS, Wallace CA, Ballinger SH, Bowyer SL, Reed AM, Passo MH, Katona IM, Miller FW, Lachenbruch PA. Development of validated disease activity and damage indices for the juvenile idiopathic inflammatory myopathies: I. Physician, parent, and patient global assessments. Juvenile Dermatomyositis Disease Activity Collaborative Study Group. Arthritis Rheum. 1997 Nov;40(11):1976-83.]
This is the primary publication of this tool. Please seek permission to use from the publisher and authors.
Muscle Strength Testing - Manual Muscle Testing (MMT)
This tool is available under the toolset Disease Activity - Core Set ("/Rhythmyx/assembler/render?sys_contentid=35661&sys_revision=1&sys_variantid=639&sys_context=0&sys_authtype=0&sys_siteid=&sys_folderid=" sys_dependentvariantid="639" sys_dependentid="35661" inlinetype="rxhyperlink" rxinlineslot="103" sys_dependentid="35661" sys_siteid="" sys_folderid="")
Functional Assessment Tools - HAQ, CHAQ
This tool is available under the toolset Disease Activity - Core Set ("/Rhythmyx/assembler/render?sys_contentid=35661&sys_revision=1&sys_variantid=639&sys_context=0&sys_authtype=0&sys_siteid=&sys_folderid=" sys_dependentvariantid="639" sys_dependentid="35661" inlinetype="rxhyperlink" rxinlineslot="103" sys_dependentid="35661" sys_siteid="" sys_folderid="")