Pain in Myositis - Rheumatology

Background: Sporadic inclusion body myositis (sIBM) is a rare and slowly pro- gressive skeletal muscle disease that can cause hand dysfunction, which is a major source of disability. Tendon transfers have been reliably used to improve function in other neuromuscular settings. Given that sIBM patients often present with flex- ion impairments and mostly functioning extensors, we investigated the potential opportunity for tendon transfer surgery to improve hand dysfunction in sIBM patients

Methods: We conducted a scoping review for studies of sIBM and tendon trans- fers, extracted descriptions of hand function and surgical technique, and recorded results in terms of hand function. We also conducted an institutional review board– approved survey with 470 participants to determine baseline patient-reported function and to determine participant perceptions and expectations for tendon transfer surgery to improve hand function in sIBM.

Results: We identified three published case reports on tendon transfers in sIBM patients with subjectively improved grip and pinch strength, but standardized mea- sures of hand function or quality-of-life were not reported. Within the surveyed cohort, half of participants reported that they would consider surgery, yet only 8% had been referred to a hand surgeon. Fifty four percent of participants reported that they would consider surgery if there would be 1–2 years of benefit after surgery. All participants who would consider surgery also had significant upper extremity disability.

Discussion: Tendon transfer surgery has the potential to improve quality-of-life for sIBM patients, and there is significant patient interest in this approach. To objec- tively assess its efficacy, we propose conducting a surgical trial

Takeaways

Question: Can tendon transfer surgery improve hand function for patients with sIBM?

Findings: Our scoping review revealed three publications describing outcomes of tendon transfers in sIBM patients. We surveyed 232 participants, and 54% would consider surgery if it provided 1-2 years of benefit. This goal is feasible; tendon transfers have been beneficial for at least 2 years for ideal surgical candidates.

Meaning: Tendon transfers show promise for improving hand function in sIBM patients.

IIMs are rare conditions, and to our knowledge, this is the largest cohort of participants identifying with IIMs that demonstrates significant factors associated with financial worry and personal financial burden following diagnosis of IIMs.

Within this study, 202 participants (43 %) reported that they were experiencing high financial worry. The reported financial burden within this study is comparable to the medical financial burden of the general population within the US.

• Odds of financial worry is 3.016 higher given current insurance coverage is Medicaid compared to participants who do not have medicaid (p = 0.027).