Presentation (CTI)

OBJECTIVES: More than a third of people with autoimmune neuromuscular disorders (ANMD) need caregiver (CG) assistance for housecleaning/maintenance, transportation, shopping, and meal preparation. Caregiver burden (CB; the multifaceted strain perceived by caregivers over time when caring for others) is rarely considered in health economic and outcomes research, or in the provision of clinical care and support. This review assessed how, and to what extent, ANMD CB is described in the literature.
METHODS: A PubMed search (May 2026) identified primary research. ANMD and associated disorder terms were paired with CG and burden terms. Results were limited to English-language publications from the past 10 years. Of 59 identified papers, 13 were retained after abstract screening and 8 after full-text review; one additional study was then identified from reference lists.
RESULTS: All studies were cross-sectional. Seven used survey methods and 2 were mixed-methods. Four did not specify which CGs were included, one study recruited only parents, three allowed any unpaid CGs, one also allowed paid CGs. Eleven countries were represented, with five single-country studies. CB was multi-dimensional, with daily activities (including work), mental health, physical health, social functioning, relationships (with the patient and/or family members) and wealth, all affected by providing care. CB is well captured through caregiver-specific clinical outcome assessment (COA) tools (e.g., ZBI-22) and qualitative research, but generic COA measures (e.g., EQ-5D) underestimate caregiving’s impact on daily life. CB was influenced by severity and duration of ANMD, patients’ and CGs’ symptoms of depression, and household income, but CB didn’t seem to differ meaningfully by country. Some studies reported a benefit of caregiving, including resilience, knowledge and improved relationship with the patient.
CONCLUSIONS: CB is significant in ANMD. Supportive measures should be provisioned to both patients and their CGs. Further research should explore whether CB differs by relationship (e.g., spouse/partner vs parent vs child).