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Review
. 2019 Nov 19;21(11):62.
doi: 10.1007/s11926-019-0862-5.

Patient-Reported Outcomes in Adult Idiopathic Inflammatory Myopathies

Dana DiRenzo  1 , Clifton O Bingham 3rd  1 , Christopher A Mecoli  2
Affiliations
Review

Patient-Reported Outcomes in Adult Idiopathic Inflammatory Myopathies

Dana DiRenzo et al. Curr Rheumatol Rep. .

Abstract

Purpose of review: Idiopathic inflammatory myopathies (IIM) have considerable impact on patient symptoms and quality of life. We have reviewed the evolution of patient-centered care and use of patient-reported outcome measures (PROMs) for adults with IIM.

Recent findings: Use of PROMs in myositis care and research is limited, although the importance of incorporation into routine practice and trials has become increasingly recognized. Several key domains/measures have been identified including the patient global assessment of disease activity, physical function as measured by the health assessment questionnaire-disability index (HAQ-DI), Short Form Health Survey-36 (SF-36), or the Patient-Reported Outcome Measurement Information System ® (PROMIS®) in adult IIM. Data are limited for these instruments concerning their reliability, content and construct validity, and responsiveness. Incorporation of the patient perspective into clinical care and research may be used to address the unmet/unaddressed needs of the patient living with myositis. Several ongoing projects aim to bring validated PROMs to the IIM community.

Keywords: Health-related quality of life; Idiopathic inflammatory myopathies; Patient-centered care; Patient-report outcomes.

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Conflict of interest statement

Conflict of Interest Dr. Bingham reports serving as an Executive Committee member for Outcome Measures in Rheumatology (OMERACT), which received hands-off funding from more than 20 pharmaceutical and research organizations. He receives no financial remuneration for this role. Dr. DiRenzo has nothing to disclose. Dr. Mecoli has nothing to disclose.

Figures

Fig. 1
Fig. 1
Modified OMERACT core domain set for patient-reported outcome (PRO) domains in adult IIM from Regardt et al. [11]
Fig. 2
Fig. 2
Example of output from PROMIS-29 profile for an individual clinic patient. Each individual domain (e.g., Sleep) has an associated T-score reflecting the patient’s status compared to that of the general population
See this image and copyright information in PMC

References

    1. Dimachkie MM, Barohn RJ, Amato AA. Idiopathic inflammatory myopathies. Neurol Clin. 2014;32:595–628. - PMC - PubMed

    1. Rider LG, Aggarwal R, Machado PM, et al. Update on outcome assessment in myositis. Nat Rev Rheumatol. 2018;14:303–18

      •This study provides a comprehensive overview of outcome measures, including PROMs, used in both juvenile and adult IIM.

    1. Rotenstein LS, Huckman RS, Wagle NW. Making patients and doctors happier — the potential of patient-reported outcomes. N Engl J Med. 2017;377:1309–12. - PubMed
    1. Locklear T, Weinfurt KAA. Resource chapters: patient-reported outcomes. In: Rethinking Clinical Trials: A Living Textbook of Pragmatic Clinical Trials.
    1. General info Sub Page, https://www.cms.gov/Medicare/Quality-Initiatives-Patient-Assessment-Inst... (2018, accessed 14 April 2019).

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