{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,16]],"date-time":"2026-10-16T19:29:46Z","timestamp":1792178986327,"version":"4.4.0"},"reference-count":92,"publisher":"The Journal of Rheumatology","issue":"3","content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["J Rheumatol"],"published-print":{"date-parts":[[2014,3]]},"abstract":"<jats:p>The newly formed Outcome Measures in Rheumatology (OMERACT) Myositis Special Interest Group (SIG) was established to examine patient-reported outcome measures (PROM) in myositis. At OMERACT 11, a literature review of PROM used in the idiopathic inflammatory myopathies (IIM) and other neuromuscular conditions was presented. The group examined in more detail 2 PROM more extensively evaluated in patients with IIM, the Myositis Activities Profile, and the McMaster-Toronto Arthritis Patient Preference Disability Questionnaire, through the OMERACT filter of truth, discrimination, and feasibility. Preliminary results from a qualitative study of patients with myositis regarding their symptoms were discussed that emphasized the range of symptoms experienced: pain, physical tightness\/stiffness, fatigue, disease effect on emotional life and relationships, and treatment-related side effects. Following discussion of these results and following additional discussions since OMERACT 11, a research agenda was developed. The next step in evaluating PROM in IIM will require additional focus groups with a spectrum of patients with different myositis disease phenotypes and manifestations across a range of disease activity, and from multiple international settings. The group will initially focus on dermatomyositis and polymyositis in adults. Qualitative analysis will facilitate the identification of commonalities and divergent patient-relevant aspects of disease, insights that are critical given the heterogeneous manifestations of these diseases. Based on these qualitative studies, existing myositis PROM can be examined to more thoroughly assess content validity, and will be important to identify gaps in domain measurement that will be required to develop a preliminary core set of patient-relevant domains for IIM.<\/jats:p>","DOI":"10.3899\/jrheum.131247","type":"journal-article","created":{"date-parts":[[2014,1,16]],"date-time":"2014-01-16T04:53:52Z","timestamp":1389848032000},"page":"581-592","source":"Crossref","is-referenced-by-count":37,"title":["Patient-reported Outcomes and Adult Patients\u2019 Disease Experience in the Idiopathic Inflammatory Myopathies. Report from the OMERACT 11 Myositis Special Interest Group"],"prefix":"10.3899","volume":"41","author":[{"given":"Helene","family":"Alexanderson","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Maria Del","family":"Grande","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"suffix":"III","given":"Clifton O.","family":"Bingham","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Ana-Maria","family":"Orbai","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Catherine","family":"Sarver","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Katherine","family":"Clegg-Smith","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Ingrid E.","family":"Lundberg","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Yeong Wook","family":"Song","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Lisa","family":"Christopher-Stine","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"2262","published-online":{"date-parts":[[2014,1,15]]},"reference":[{"key":"2018112909325332000_41.3.581.1","doi-asserted-by":"publisher","DOI":"10.1016\/j.rdc.2011.01.001"},{"key":"2018112909325332000_41.3.581.2","doi-asserted-by":"publisher","DOI":"10.1016\/j.berh.2004.02.009"},{"key":"2018112909325332000_41.3.581.3","doi-asserted-by":"publisher","DOI":"10.1093\/rheumatology\/keh404"},{"key":"2018112909325332000_41.3.581.4","doi-asserted-by":"publisher","DOI":"10.1007\/s11926-007-0044-8"},{"key":"2018112909325332000_41.3.581.5","doi-asserted-by":"publisher","DOI":"10.1093\/rheumatology\/40.11.1262"},{"key":"2018112909325332000_41.3.581.6","doi-asserted-by":"publisher","DOI":"10.1097\/00005650-199206000-00002"},{"key":"2018112909325332000_41.3.581.7","first-page":"2246","article-title":"Progress since OMERACT 6 on including patient perspective in rheumatoid arthritis outcome assessment","volume":"32","author":"Kirwan","year":"2005","journal-title":"J Rheumatol"},{"key":"2018112909325332000_41.3.581.8","doi-asserted-by":"publisher","DOI":"10.3899\/jrheum.090360"},{"key":"2018112909325332000_41.3.581.9","first-page":"2250","article-title":"Incorporating the patient perspective into outcome assessment in rheumatoid arthritis\u2014progress at OMERACT 7","volume":"32","author":"Kirwan","year":"2005","journal-title":"J Rheumatol"},{"key":"2018112909325332000_41.3.581.10","unstructured":"Committee of Medicinal Products for Human Use. European Medicines Agency . Reflection Paper on the Regulatory Guidance for the Use of Health-related Quality of Life (HRQOL) Measures in the Evaluation of Medicinal Products, London, 27 July, 2005. [Internet. Accessed November 18, 2013.] Available from: http:\/\/www.ema.europa.eu\/docs\/en_GB\/document_library\/Scientific_guideline\/2009\/09\/WC500003637.pdf"},{"key":"2018112909325332000_41.3.581.11","unstructured":"US Food and Drug Administration . Guidance for Industry \u2013 patient-reported outcome measures: use in medical product development to support labeling claims. 2012 [Internet. Accessed November 18, 2013.] Available from: http:\/\/www.fda.gov\/downloads\/Drugs\/GuidanceComplianceRegulatoryInformation\/Guidances\/UCM183282.pdf)."},{"key":"2018112909325332000_41.3.581.12","unstructured":"Critical Path Institute (cPATH) . Patient Reported Outcomes (PRO) Consortium. [Internet.] Available from:\/\/c-path.org\/PRO.cfm)."},{"key":"2018112909325332000_41.3.581.13","first-page":"315","article-title":"ICF-based classification and measurement of functioning","volume":"44","author":"Stucki","year":"2008","journal-title":"Eur J Phys Rehabil Med"},{"key":"2018112909325332000_41.3.581.14","doi-asserted-by":"crossref","first-page":"463124","DOI":"10.5402\/2011\/463124","article-title":"Patient preference assessment reveals disease aspects not covered by recommended outcomes in polymyositis and dermatomyositis","volume":"2011","author":"Alemo Munters","year":"2011","journal-title":"ISRN Rheumatol"},{"key":"2018112909325332000_41.3.581.15","doi-asserted-by":"publisher","DOI":"10.1002\/art.1780230202"},{"key":"2018112909325332000_41.3.581.16","first-page":"2386","article-title":"Development of the myositis activities profile\u2014validity and reliability of a self-administered questionnaire to assess activity limitations in patients with polymyositis\/dermatomyositis","volume":"29","author":"Alexanderson","year":"2002","journal-title":"J Rheumatol"},{"key":"2018112909325332000_41.3.581.17","doi-asserted-by":"publisher","DOI":"10.1136\/annrheumdis-2011-201201"},{"key":"2018112909325332000_41.3.581.18","doi-asserted-by":"publisher","DOI":"10.3899\/jrheum.110401"},{"key":"2018112909325332000_41.3.581.19","doi-asserted-by":"publisher","DOI":"10.1093\/rheumatology\/keq455"},{"key":"2018112909325332000_41.3.581.20","doi-asserted-by":"publisher","DOI":"10.1002\/acr.20532"},{"key":"2018112909325332000_41.3.581.21","first-page":"198","article-title":"The OMERACT filter for Outcome Measures in Rheumatology","volume":"25","author":"Boers","year":"1998","journal-title":"J Rheumatol"},{"key":"2018112909325332000_41.3.581.22","doi-asserted-by":"publisher","DOI":"10.1037\/0022-0167.52.2.196"},{"key":"2018112909325332000_41.3.581.23","doi-asserted-by":"publisher","DOI":"10.1016\/j.apmr.2011.11.022S0003-9993(11)00995-6"},{"key":"2018112909325332000_41.3.581.24","doi-asserted-by":"publisher","DOI":"10.1002\/mus.20958"},{"key":"2018112909325332000_41.3.581.25","doi-asserted-by":"publisher","DOI":"10.1212\/01.wnl.0000257819.47628.41"},{"key":"2018112909325332000_41.3.581.26","unstructured":"Landgraf J Abetz L Ware J . The CHQ users manual. 1st ed. Boston, MA: The Health Institute; 1996."},{"key":"2018112909325332000_41.3.581.27","first-page":"1106","article-title":"Validation of the Childhood Health Assessment Questionnaire in the juvenile idiopathic myopathies. Juvenile Dermatomyositis Disease Activity Collaborative Study Group","volume":"28","author":"Huber","year":"2001","journal-title":"J Rheumatol"},{"key":"2018112909325332000_41.3.581.28","doi-asserted-by":"publisher","DOI":"10.1212\/WNL.48.3.712"},{"key":"2018112909325332000_41.3.581.29","doi-asserted-by":"publisher","DOI":"10.1001\/archneur.1996.00550020045014"},{"key":"2018112909325332000_41.3.581.30","first-page":"61","article-title":"Functional evaluation: the Barthel Index","volume":"14","author":"Mahoney","year":"1965","journal-title":"Md State Med J"},{"key":"2018112909325332000_41.3.581.31","unstructured":"Munro BH . Statistical methods for health care research. 3rd ed. Philadelphia: Lippincott;1997:235."},{"key":"2018112909325332000_41.3.581.32","unstructured":"Nunnally J . Psychometric theory. New York: McGraw-Hill; 1978."},{"key":"2018112909325332000_41.3.581.33","doi-asserted-by":"publisher","DOI":"10.2307\/2529310"},{"key":"2018112909325332000_41.3.581.34","doi-asserted-by":"publisher","DOI":"10.3899\/jrheum.120504"},{"key":"2018112909325332000_41.3.581.35","first-page":"446","article-title":"The MACTAR Patient Preference Disability Questionnaire\u2014an individualized functional priority approach for assessing improvement in physical disability in clinical trials in rheumatoid arthritis","volume":"14","author":"Tugwell","year":"1987","journal-title":"J Rheumatol"},{"key":"2018112909325332000_41.3.581.36","doi-asserted-by":"publisher","DOI":"10.1002\/art.23819"},{"key":"2018112909325332000_41.3.581.37","first-page":"2801","article-title":"Validity of the MACTAR questionnaire as a functional index in a rheumatoid arthritis clinical trial. The McMaster Toronto Arthritis","volume":"27","author":"Verhoeven","year":"2000","journal-title":"J Rheumatol"},{"key":"2018112909325332000_41.3.581.38","doi-asserted-by":"publisher","DOI":"10.3109\/03009749509099285"},{"key":"2018112909325332000_41.3.581.39","doi-asserted-by":"crossref","unstructured":"Alemo Munters L Dastmalchi M Andgren V Emilsson C Bergeg\u00e5rd J Regardt M Endurance exercise improves health and may reduce disease activity in patients with established polymyositis and dermatomyositis. A multicenter randomized controlled trial with a 1-year open extension follow-up. Arthritis Care Res 2013; July 16. [E-pub ahead of print]","DOI":"10.1002\/acr.22068"},{"key":"2018112909325332000_41.3.581.40","unstructured":"World Health Organization . International Classification of Functioning, Disability and Health (ICF). [Internet. Accessed November 18, 2013.] Available from: http:\/\/www.who.int\/classifications\/icf\/en\/"},{"key":"2018112909325332000_41.3.581.41","doi-asserted-by":"publisher","DOI":"10.1002\/art.1780350102"},{"key":"2018112909325332000_41.3.581.42","first-page":"1380","article-title":"A functional index in myositis","volume":"23","author":"Josefson","year":"1996","journal-title":"J Rheumatol"},{"key":"2018112909325332000_41.3.581.43","doi-asserted-by":"publisher","DOI":"10.1002\/acr.20035"},{"key":"2018112909325332000_41.3.581.44","doi-asserted-by":"publisher","DOI":"10.1002\/art.21715"},{"key":"2018112909325332000_41.3.581.45","doi-asserted-by":"publisher","DOI":"10.1002\/art.22780"},{"issue":"Suppl 10","key":"2018112909325332000_41.3.581.46","first-page":"S92","article-title":"Increased depression and anxiety symptoms in a group of dermatomyositis patients","volume":"63","author":"Ghazi","year":"2011","journal-title":"Arthritis Rheum"},{"issue":"Suppl","key":"2018112909325332000_41.3.581.47","first-page":"S89","article-title":"Fatigue in idiopathic inflammatory myopathies (IIM): Prevalence, impact and association with quality of life","volume":"63","author":"Campbell","year":"2011","journal-title":"Arthritis Rheum"},{"issue":"Suppl","key":"2018112909325332000_41.3.581.48","first-page":"S90","article-title":"Predictors of experienced fatigue in idiopathic inflammatory myopathy (IIM): Psychological factors and pain are more predictive than disease activity, damage or strength","volume":"63","author":"Campbell","year":"2011","journal-title":"Arthritis Rheum"},{"key":"2018112909325332000_41.3.581.49","doi-asserted-by":"publisher","DOI":"10.1093\/rheumatology\/41.1.22"},{"key":"2018112909325332000_41.3.581.50","doi-asserted-by":"publisher","DOI":"10.1093\/rheumatology\/keq356"},{"key":"2018112909325332000_41.3.581.51","doi-asserted-by":"publisher","DOI":"10.1093\/rheumatology\/38.7.608"},{"key":"2018112909325332000_41.3.581.52","doi-asserted-by":"publisher","DOI":"10.1080\/030097400447679"},{"key":"2018112909325332000_41.3.581.53","doi-asserted-by":"publisher","DOI":"10.1136\/jnnp.2009.183863"},{"issue":"Suppl 2","key":"2018112909325332000_41.3.581.54","doi-asserted-by":"crossref","first-page":"118","DOI":"10.2298\/SARH05S2118V","article-title":"Importance of aggressive treatment in juvenile dermatomyositis [Serbian]","volume":"133","author":"Vojinovi\u0107","year":"2005","journal-title":"Srp Arh Celok Lek"},{"key":"2018112909325332000_41.3.581.55","doi-asserted-by":"publisher","DOI":"10.1002\/art.24343"},{"key":"2018112909325332000_41.3.581.56","first-page":"221","article-title":"The Nottingham Health Profile: subjective health status and medical consultations","volume":"15","author":"Hunt","year":"1981","journal-title":"Soc Sci Med A"},{"key":"2018112909325332000_41.3.581.57","first-page":"447","article-title":"A comparative study of outcome in myositis and other musculoskeletal disorders assessed using the Nottingham health profile","volume":"19","author":"Chung","year":"2001","journal-title":"Clin Exp Rheumatol"},{"key":"2018112909325332000_41.3.581.58","unstructured":"Varni JW . The PedsQL measurement model for the Pediatric Quality of Life Inventory. [Internet. Accessed November 18, 2013.] Available from: http:\/\/www.pedsql.org\/"},{"key":"2018112909325332000_41.3.581.59","doi-asserted-by":"publisher","DOI":"10.1093\/rheumatology\/ker256"},{"key":"2018112909325332000_41.3.581.60","doi-asserted-by":"publisher","DOI":"10.1111\/j.1468-1331.2010.02992.x"},{"key":"2018112909325332000_41.3.581.61","doi-asserted-by":"publisher","DOI":"10.1186\/1477-7525-9-114"},{"key":"2018112909325332000_41.3.581.62","doi-asserted-by":"publisher","DOI":"10.1212\/01.WNL.0000134675.98525.79"},{"key":"2018112909325332000_41.3.581.63","doi-asserted-by":"publisher","DOI":"10.1002\/art.1780401109"},{"key":"2018112909325332000_41.3.581.64","first-page":"603","article-title":"Defining clinical improvement in adult and juvenile myositis","volume":"30","author":"Rider","year":"2003","journal-title":"J Rheumatol"},{"key":"2018112909325332000_41.3.581.65","doi-asserted-by":"publisher","DOI":"10.1001\/archderm.143.6.763"},{"key":"2018112909325332000_41.3.581.66","doi-asserted-by":"publisher","DOI":"10.1002\/art.23248"},{"key":"2018112909325332000_41.3.581.67","doi-asserted-by":"publisher","DOI":"10.1080\/08916930600623817"},{"key":"2018112909325332000_41.3.581.68","doi-asserted-by":"publisher","DOI":"10.1002\/ana.22477"},{"key":"2018112909325332000_41.3.581.69","doi-asserted-by":"publisher","DOI":"10.2340\/00015555-0177"},{"key":"2018112909325332000_41.3.581.70","doi-asserted-by":"publisher","DOI":"10.3109\/s10165-007-0013-0"},{"key":"2018112909325332000_41.3.581.71","doi-asserted-by":"publisher","DOI":"10.1093\/rheumatology\/kep302"},{"key":"2018112909325332000_41.3.581.72","doi-asserted-by":"publisher","DOI":"10.1191\/0269215503cr572oa"},{"key":"2018112909325332000_41.3.581.73","first-page":"326","article-title":"Measuring disability in juvenile dermatomyositis: validity of the childhood health assessment questionnaire","volume":"22","author":"Feldman","year":"1995","journal-title":"J Rheumatol"},{"key":"2018112909325332000_41.3.581.74","doi-asserted-by":"publisher","DOI":"10.1093\/rheumatology\/keg210"},{"key":"2018112909325332000_41.3.581.75","doi-asserted-by":"publisher","DOI":"10.1093\/rheumatology\/kel099"},{"key":"2018112909325332000_41.3.581.76","doi-asserted-by":"publisher","DOI":"10.1002\/art.21378"},{"key":"2018112909325332000_41.3.581.77","doi-asserted-by":"publisher","DOI":"10.1002\/acr.20015"},{"key":"2018112909325332000_41.3.581.78","unstructured":"Fix AJ Daughton D . Human activity profile professional manual. Odessa, Florida: Psychological Assessment Resources, Inc.; 1988."},{"key":"2018112909325332000_41.3.581.79","doi-asserted-by":"publisher","DOI":"10.1097\/00007632-200307150-00019"},{"key":"2018112909325332000_41.3.581.80","doi-asserted-by":"publisher","DOI":"10.1016\/j.pmrj.2009.04.007"},{"key":"2018112909325332000_41.3.581.81","doi-asserted-by":"publisher","DOI":"10.1007\/s004150050005"},{"key":"2018112909325332000_41.3.581.82","doi-asserted-by":"publisher","DOI":"10.1212\/WNL.43.5.876"},{"key":"2018112909325332000_41.3.581.83","doi-asserted-by":"publisher","DOI":"10.1016\/j.nmd.2010.03.011"},{"key":"2018112909325332000_41.3.581.84","doi-asserted-by":"publisher","DOI":"10.1007\/s10072-011-0657-6"},{"key":"2018112909325332000_41.3.581.85","first-page":"494","article-title":"Polyarticular disability: a functional assessment","volume":"58","author":"Convery","year":"1977","journal-title":"Arch Phys Med Rehabil"},{"key":"2018112909325332000_41.3.581.86","doi-asserted-by":"publisher","DOI":"10.1056\/NEJM199205213262102"},{"key":"2018112909325332000_41.3.581.87","doi-asserted-by":"publisher","DOI":"10.1002\/1529-0131(199803)41:3<392::AID-ART3>3.0.CO;2-X"},{"key":"2018112909325332000_41.3.581.88","doi-asserted-by":"publisher","DOI":"10.1056\/NEJM199312303292704"},{"key":"2018112909325332000_41.3.581.89","doi-asserted-by":"publisher","DOI":"10.1016\/0304-3959(87)91074-8"},{"key":"2018112909325332000_41.3.581.90","doi-asserted-by":"publisher","DOI":"10.1016\/0022-3999(93)90081-P"},{"key":"2018112909325332000_41.3.581.91","doi-asserted-by":"crossref","first-page":"93","DOI":"10.1097\/00006199-199303000-00006","article-title":"Correlates of fatigue in older adults with rheumatoid arthritis","volume":"42","author":"Belza","year":"1993","journal-title":"Nurs Res"},{"key":"2018112909325332000_41.3.581.92","unstructured":"McNair DM Lorr M Droppleman LF . Manual for the profile of mood states. San Diego: Educational and Industrial Testing Service; 1971."}],"container-title":["The Journal of Rheumatology"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/syndication.highwire.org\/content\/doi\/10.3899\/jrheum.131247","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2018,11,29]],"date-time":"2018-11-29T18:41:53Z","timestamp":1543516913000},"score":1,"resource":{"primary":{"URL":"http:\/\/www.jrheum.org\/lookup\/doi\/10.3899\/jrheum.131247"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2014,1,15]]},"references-count":92,"journal-issue":{"issue":"3","published-online":{"date-parts":[[2014,3,1]]},"published-print":{"date-parts":[[2014,3]]}},"alternative-id":["10.3899\/jrheum.131247"],"URL":"https:\/\/doi.org\/10.3899\/jrheum.131247","relation":{},"ISSN":["0315-162X","1499-2752"],"issn-type":[{"value":"0315-162X","type":"print"},{"value":"1499-2752","type":"electronic"}],"subject":[],"published":{"date-parts":[[2014,1,15]]}}}