Caregiving burden among caregivers of people with myasthenia gravis
Dewilde, Sarah (Services in Health Economics (SHE))
Tollenaar, Nafthali H. (Services in Health Economics (SHE))
Boulanger, Pierre (Association des Myasthéniques Isolés et Solidaires (AMIS))
Cortés-Vicente, Elena (Institut de Recerca Sant Pau)
Mantegazza, Renato (Associazione Italiana Miastenia e Malattie Immunodegenerative)
Vanoli, Fiammetta (Università degli Studi di Roma "La Sapienza")
Pawlitzki, Marc (Heinrich Heine University Düsseldorf)
Heinrich, Malgorzata (Vitaccess)
Phillips, Glenn (Argenx BV)
Archer, Annie (Myasthenia patient group. AFM-Telethon)
Pardo, Raquel (Asociación Miastenia de España (AMES))
Lehnerer, Sophie (Berlin Institute of Health at Charité - Universitätsmedizin)
De Ruyck, Femke (Argenx BV)
Paci, Sandra (Argenx BV)
Universitat Autònoma de Barcelona. Departament de Medicina

Data:	2025
Resum:	Introduction/aims: Informal caregivers play an important role in the lives of people with Myasthenia gravis (MG). This study aims to assess the caregiver burden (CB) experienced by caregivers of MG patients. Methods: A cross-sectional study design collected patient and caregiver data in Germany, Italy, Spain, the UK, and France. The Zarit Burden Interview (ZBI-22), EQ-5D-5L and bolt-on questions, and PROMIS Global Health-10 were used to measure CB and overall health-related quality of life (HRQoL). Results: Caregivers (N = 69) reported a mean ZBI-22 score of 24. 3, with 40. 6% reporting no burden, 47. 8% mild-to-moderate burden, 8. 7% moderate-to-severe burden, and 2. 9% severe burden. The most impacted ZBI-22 dimensions were "losing control over one's life", "financial burden" and "relationships with relatives". Based on a generic health-related quality of life scale (EQ-5D-5L plus bolt-on questions), the dimensions that were more frequently reported among MG caregivers to cause moderate-to-extreme problems were: tiredness (43%), self-confidence (32%), and anxiety/depression (28%). EQ-5D-5L utilities (values from -1 to 1, reflecting overall HRQoL) were negatively associated with higher ZBI-22 scores (little or no burden: 0. 942, mild-to-moderate burden: 0. 864, moderate-to-severe burden: 0. 783, severe burden: 0. 570). Regarding PROMIS-10 items, 48% of caregivers reported often/always being bothered by anxiety, depression, or irritation; 47% reported being not at all or little able to carry out daily activities; and 37% reported having (very) severe fatigue. Conclusion: Informal caregivers of MG patients experience a substantial burden, impacting their physical, emotional, and financial well-being. Findings highlight the need for tailored interventions to alleviate CB and enhance the caregivers' overall HRQoL.
Drets:	Aquest document està subjecte a una llicència d'ús Creative Commons. Es permet la reproducció total o parcial, la distribució, la comunicació pública de l'obra i la creació d'obres derivades, fins i tot amb finalitats comercials, sempre i quan es reconegui l'autoria de l'obra original.
Llengua:	Anglès
Document:	Article ; recerca ; Versió publicada
Matèria:	Caregiver burden ; Informal caregiver ; Myasthenia gravis ; Quality of life ; ZBI-22
Publicat a:	Orphanet journal of rare diseases, Vol. 20, Num. 1 (December 2025) , p. 311, ISSN 1750-1172

DOI: 10.1186/s13023-025-03842-w
PMID: 40537818

13 p, 1.0 MB

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