Pos0070-Pare caregiver Burden Among Idiopathic Inflammatory Myopathy (Iim) Caregivers

Abstract

BackgroundIdiopathic inflammatory myopathies (IIMs) often lead to severe impairments in quality-of-life related to physical and emotional burdens. While the healthcare delivery burden in patients with specific types of IIMs has been explored[1], little is known about caregivers‘ burden, especially in rare diseses.[2]ObjectivesMyositis Support and Understanding (MSU), a non-profit patient-led advocacy organization for IIMs, distributed a survey to its members to better understand caregiver burden. The aim of this study was to evaluate the association between caregiver burden by IIM subtype and factors that impact caregiver wellbeing.MethodsData Source:An anonymous survey was distributed via RedCAP to MSU members worldwide. A total of 120 caregivers (age range: 30-89) responded to the survey over the course of 4 weeks.Survey: Demographic, diagnostic information, and disease duration data was collected from participants and their caregivers. The Zarit Burden Interview (ZBI), a validated instrument for a diverse range of patients and caregivers, was used to determine caregiver burden, testing domains including health, mental well-being, personal relationships, physical overload, social support, and home environment[3].Statistical analysis: Pearson chi-square test was performed to assess the association between duration of caregiving, myositis type, and caregiver age on the social well-being of caregivers. Regression analysis was also conducted to identify risk factors for increased caregiver burden. Significance was set at p<0.05.ResultsMost of the caregivers in this study were responsible for the care of participants with inclusion body myositis (IBM, 64%) followed by dermatomyositis (DM, 22%).Caregivers reported that 74% of IIM patients under their care had moderate to severe difficulties with mobility and required help some or most of the time. A total of 102 caregivers completed the ZBI: reported burden was mild to moderate in 44%, moderate to severe in 25%, and severe in 4% of caregivers. There was a high degree of at least moderate severity burden in IBM (33%), DM (25%), and polymyositis (25%).ConclusionCaregivers face a high degree of burden, most evident in IBM. Burden positively correlated with disease duration with an inflection time of 6 years, thereafter caregivers reported increased burden. The domains that were most impacted include personal strain, social and family life, role strain, and loss of control over one‘s life. Insights from this study can help create specific emotional coping strategies for myositis patients and their caregivers.References[1]Christopher-Stine L, Wan GJ, Kelly W, McGowan M, Bostic R, Reed ML. Patient-reported dermatomyositis and polymyositis flare symptoms are associated with disability, productivity loss, and healthcare resource use. J Manag Care Spec Pharm. 2020 Nov;26(11):1424-1433.[2]Yang, G., Cintina, I., Pariser, A.et al.The national economic burden of a rare disease in the United States in 2019.Orphanet J Rare Dis17, 163 (2022).https://doi.org/10.1186/s13023-022-02299-5[3]Bachner, Y. G., & O’Rourke, N. (2007). Reliability generalization of responses by care providers to the Zarit Burden Interview,Aging & Mental Health, 11(6), 678-685. DOI: 10.1080/13607860701529965Acknowledgements:NIL.Disclosure of InterestsNone Declared.