Background/Purpose: Sporadic Inclusion Body Myositis (sIBM) is a progressive, idiopathic inflammatory myopathy characterized by dysphagia, weakness of proximal and distal muscles and atrophy. This cross-sectional study aims to characterize the socioeconomic burden of sIBM patients in the United States (US).

Methods: sIBM patients registered for The Myositis Association 2013 and 2014 annual patient conferences completed the Skeletal Muscle Activity and Resource Tool for sIBM (SMART-sIBM). The SMART-sIBM is a measure of self-reported resource utilization developed with extensive sIBM patient input and cognitively tested (sIBM patient interviews) to ensure its relevance to the sIBM patient population. The SMART-sIBM is designed to characterize direct and out-of-pocket expenses including items not reimbursed by US third-party payers. Patients completed the SMART-sIBM either electronically or using paper forms.

Results: Of 102 unique sIBM patients who participated, 31 were assessed both years. For the overall sample, mean age was 67.2 years (range 49–88), and the majority were male (62%), Caucasian (96%). Mean (±SD) number of years since diagnosis was 5.3 (±4.3) and years since first symptoms was 11.3 (±6.4). Approximately 36% of participants were ambulatory without use of an assistive device, 36% used an aid/brace, 17% used power mobility for long distances, 7% used power mobility most of the time, and 4% were not able to walk or stand. The average number of falls in the past month was <1 (range: 0–4) and the average number of healthcare visits due to falls in the past 12 months was 0.71 (±1.8, range: 0–12). In the past 6 months 62% of participants reported visiting specialists for their sIBM and 39% visited a general practitioner. A large majority of sIBM patients (68.4%) reported that they had to make non-reimbursed modifications to their house, apartment, or car because of their sIBM, and 76.5% reported non-reimbursed purchases of special equipment, devices, or aids since diagnosis with sIBM. Paid help for household tasks was required by 37% of participants, 60% relied on unpaid caregivers (87.5% spouse), and 42% reported a change in job status due to sIBM-related functional limitations.

Conclusion:

This study provides resource utilization data for the first time in a US sample of patients with sIBM. sIBM patients experience considerable financial burden, including important out-of-pocket expenses, due to their physical disability and loss of independence.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/resource-utilization-in-a-us-sample-of-patients-with-sporadic-inclusion-body-myositis/