The caregiver burden of idiopathic inflammatory myopathies.

Purpose: The purpose of this cross-sectional study was to determine the prevalence of caregiver burden (CB) in caregivers of patients with idiopathic inflammatory myopathies (IIM).

Methods: An anonymous survey was distributed worldwide to caregivers of myositis patients through Myositis Support and Understanding in May 2022. CB was measured using the Zarit Burden Interview. The survey also gathered caregiver demographic, financial, and insurance information as well as patient demographic and disease information.

Results: Overall, 75.8% of caregivers had at least mild to moderate CB. 39.2% reported not being affected financially by their caregiving responsibilities. A positive effect was found between CB and time since diagnosis, disability level, and financial hardship. A negative effect was found with CB and caregiver age. No association was found between IIM type and CB.

Conclusion: CB is a common experience among caregivers of all types of IIM patients. Future research can use our results to generate viable hypothesis about CB in myositis. They should also seek to further understand what contributed to CB in this population. Clinicians should also be attuned to the needs of caregivers tending to long-term myositis patients, especially caregivers of more disabled patients, older caregivers, and individuals financially challenged by caregiving.