Informal caregivers for people living with myasthenia gravis (MG) face substantial stress that affects their emotional, physical and financial well-being, according to results from a study published recently in Orphanet Journal of Rare Diseases.
The study showed that many caregivers experienced a level of burden that reduces their own health and quality of life, underlining the need for better support for those helping loved ones with this chronic neuromuscular disease.
The study surveyed 69 caregiver-patient pairs in Germany, Italy, Spain, the U.K. and France. Most caregivers were the spouse or life partner of the person with MG, and 90% lived together. Caregivers spent an average of 5.1 hours per day providing care, with 20% giving 15-49 hours a week and 30% spending 50 or more hours weekly on caregiving. A quarter reported they had to reduce work hours to manage their responsibilities.
“By recognizing the multifaceted challenges faced by caregivers, healthcare systems can provide targeted resources and support to improve caregivers’ well-being and ultimately enhance the care they provide to their loved ones with MG,” explained this study’s authors. They continued, “Moreover, these findings underline the need to improve treatment effectiveness for individuals with MG, not only to alleviate their own burden but also to reduce the burden posed on their caregivers.”
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Caregiver burden was measured with the Zarit Burden Interview (a widely used method of assessing caregiver burden), which found that 40.6% of caregivers reported no burden, but nearly half (47.8%) reported mild-to-moderate burden, and about 11.6% had moderate-to-severe or severe burden. Caregivers most often felt they were losing control over their lives, experiencing financial strain and feeling impacts on their relationships with family. Many worried about the future or felt their own health was suffering because of their caregiving role.
Health-related quality of life scores were clearly linked to the level of burden. Caregivers with little or no burden had an average utility value of 0.942 on a scale measuring health-related quality of life, while those with severe burden dropped to 0.570. Common problems reported included tiredness (43%), reduced self-confidence (32%) and anxiety or depression (28%). Almost half of caregivers said they often or always felt bothered by anxiety, depression or irritation, and about one in three had trouble performing everyday activities.
Compared to the general population, caregivers had lower mental and physical health scores, with many reporting severe fatigue and poor general health. The emotional toll was clear, with caregivers describing feeling overwhelmed and constantly responsible, sometimes at the expense of their own needs and well-being.
These results show the importance of recognizing and addressing caregiver burden for families living with MG. Providing better emotional support, resources for respite care and financial assistance can help reduce caregiver strain, improving quality of life for both caregivers and the people with MG who rely on them.
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