Purpose of review: To review the novel development of standardized clinical outcome measures used in adult patients with idiopathic inflammatory myopathies (IIMs). A further aim was to determine what aspects of IIM are covered by these outcome measures according to the International Classification of Functioning, Disability and Health (ICF).
Recent findings: The sporadic inclusion body myositis functional assessment (sIFA) is the first diagnosis-specific patient-driven patient-reported outcome measure. The adult myositis assessment tool (AMAT) is a new outcome measure assessing physical performance. Also, new criteria to assess response to treatment have been presented for both adults and children with IIM. The ICF provides a standardized frame and structure to report outcome, including functional disability. Using this framework, it is evident that there is a lack of validated patient-reported outcome measures to assess disease aspects important to patient, and that no studies have evaluated life-style factors such as physical activity in these patients.
Summary: The sIFA will ensure patient-relevant patient-reported assessment of activity limitations in patients with inclusion body myositis. The AMAT is a partly validated tool that needs to be used in clinical trials for further validation. The response criteria will enhance assessment of individual response to different treatments.