Caregiving burden among caregivers of people with myasthenia gravis
Abstract 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 Germa...
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BMC
2025-06-01
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| Series: | Orphanet Journal of Rare Diseases |
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| Online Access: | https://doi.org/10.1186/s13023-025-03842-w |
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| author | Sarah Dewilde Nafthali H. Tollenaar Pierre Boulanger Annie Archer Raquel Pardo Elena Cortés-Vicente Renato Mantegazza Fiammetta Vanoli Sophie Lehnerer Marc Pawlitzki Malgorzata Heinrich Femke De Ruyck Glenn Phillips Sandra Paci |
| author_facet | Sarah Dewilde Nafthali H. Tollenaar Pierre Boulanger Annie Archer Raquel Pardo Elena Cortés-Vicente Renato Mantegazza Fiammetta Vanoli Sophie Lehnerer Marc Pawlitzki Malgorzata Heinrich Femke De Ruyck Glenn Phillips Sandra Paci |
| author_sort | Sarah Dewilde |
| collection | DOAJ |
| description | Abstract 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. |
| format | Article |
| id | doaj-art-dfbd99e32e6d4eefb5867ec12cee8f6c |
| institution | DOAJ |
| issn | 1750-1172 |
| language | English |
| publishDate | 2025-06-01 |
| publisher | BMC |
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| series | Orphanet Journal of Rare Diseases |
| spelling | doaj-art-dfbd99e32e6d4eefb5867ec12cee8f6c2025-08-20T03:22:54ZengBMCOrphanet Journal of Rare Diseases1750-11722025-06-0120111310.1186/s13023-025-03842-wCaregiving burden among caregivers of people with myasthenia gravisSarah Dewilde0Nafthali H. Tollenaar1Pierre Boulanger2Annie Archer3Raquel Pardo4Elena Cortés-Vicente5Renato Mantegazza6Fiammetta Vanoli7Sophie Lehnerer8Marc Pawlitzki9Malgorzata Heinrich10Femke De Ruyck11Glenn Phillips12Sandra Paci13Services in Health Economics (SHE)Services in Health Economics (SHE)Association des Myasthéniques Isolés et Solidaires (AMIS)Myasthenia patient group, AFM-TelethonAsociación Miastenia de España (AMES)Hospital de la Santa Creu i Sant PauFondazione IRCCS, Istituto Nazionale Neurologico Carlo BestaFondazione IRCCS, Istituto Nazionale Neurologico Carlo BestaCharité –Universitätsmedizin Berlin, corporate member of Freie Universität Berlin and Humboldt-Universität zu Berlin, Department of Neurology with Experimental Neurology, Neuroscience Clinical Research CenterDepartment of Neurology, Medical Faculty and University Hospital Düsseldorf, Heinrich Heine University DüsseldorfVitaccessArgenx BVArgenx BVArgenx BVAbstract 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.https://doi.org/10.1186/s13023-025-03842-wCaregiver burdenMyasthenia gravisZBI-22Informal caregiverQuality of life |
| spellingShingle | Sarah Dewilde Nafthali H. Tollenaar Pierre Boulanger Annie Archer Raquel Pardo Elena Cortés-Vicente Renato Mantegazza Fiammetta Vanoli Sophie Lehnerer Marc Pawlitzki Malgorzata Heinrich Femke De Ruyck Glenn Phillips Sandra Paci Caregiving burden among caregivers of people with myasthenia gravis Orphanet Journal of Rare Diseases Caregiver burden Myasthenia gravis ZBI-22 Informal caregiver Quality of life |
| title | Caregiving burden among caregivers of people with myasthenia gravis |
| title_full | Caregiving burden among caregivers of people with myasthenia gravis |
| title_fullStr | Caregiving burden among caregivers of people with myasthenia gravis |
| title_full_unstemmed | Caregiving burden among caregivers of people with myasthenia gravis |
| title_short | Caregiving burden among caregivers of people with myasthenia gravis |
| title_sort | caregiving burden among caregivers of people with myasthenia gravis |
| topic | Caregiver burden Myasthenia gravis ZBI-22 Informal caregiver Quality of life |
| url | https://doi.org/10.1186/s13023-025-03842-w |
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