The caregiver burden of idiopathic inflammatory myopathies.

IF 3.3 3区医学 Q1 HEALTH CARE SCIENCES & SERVICES

Quality of Life Research Pub Date : 2025-03-26 DOI:10.1007/s11136-025-03953-8

Parker Brady, Roberto Sergio Hernandez, Amber Salter, Catherine Hua, Lynn Wilson, Manuel Lubinus, Yuan-Pai Hu, Dhruv Nandakumar, Abhiram R Bhashyam, Salman Bhai

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引用次数: 0

Abstract

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.

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来源期刊

Quality of Life Research 医学-公共卫生、环境卫生与职业卫生

CiteScore

6.50

自引率

8.60%

发文量

224

审稿时长

3-8 weeks

期刊介绍： Quality of Life Research is an international, multidisciplinary journal devoted to the rapid communication of original research, theoretical articles and methodological reports related to the field of quality of life, in all the health sciences. The journal also offers editorials, literature, book and software reviews, correspondence and abstracts of conferences. Quality of life has become a prominent issue in biometry, philosophy, social science, clinical medicine, health services and outcomes research. The journal''s scope reflects the wide application of quality of life assessment and research in the biological and social sciences. All original work is subject to peer review for originality, scientific quality and relevance to a broad readership. This is an official journal of the International Society of Quality of Life Research.