OBJECTIVES: sIBM is a progressive idiopathic inflammatory myopathy characterized by atrophy and weakness of proximal and distal muscle groups; knee extensors and wrist/finger flexors and dysphagic processes are frequently involved. Progressive weakness results in loss of independence and need for assistive devices and supportive care. The progressive nature of sIBM leads to increasing medical expenses, many of which are not covered by third-party payers, making quantification difficult using existing databases. SMART-sIBM, a self-report tool, was developed to better characterize out-of-pocket expenses and non-reimbursable items not captured by health care systems.  METHODS:

SMART-sIBM was developed based on in-depth interview data from 20 sIBM patients, review of existing resource-use measures, and input from clinical experts (n=9). SMART-sIBM captures resource utilization and costs of sIBM over a 6-month, retrospective recall period, including out-of-pocket costs and third-party payer expenses. A cross-sectional study (n=102 sIBM patients) was conducted in the US to gather preliminary resource utilization and patient financial data. Draft versions were reviewed by clinical experts and patients independently, and were refined before use in the cross-sectional study. RESULTS: Patients had a mean age of 66 years, disease duration of 1-18 years, and varied physical limitations. All patients reported need for frequent health care visits, and 80% indicated need for house/vehicle modifications and purchase of assistive equipment to accommodate sIBM-related disabilities. Nearly one-third of patients required paid help with household tasks, while more than one-half relied on help from unpaid caregivers (e.g., spouse, friend). Nearly half (45%) reported changes in job status because of sIBM-related functional limitations. CONCLUSIONS: Results of this study demonstrate, for the first time, the high resource utilization and financial burden experienced by sIBM patients in the USA. Further data collection of this type is needed to better understand the true economic burden of sIBM not only in US but globally.