Novel insights of disability assessment in adult myositis

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).

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.

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.