Caregiver burden with MG rises with symptom severity, depression

Study in China underscores stress of diminished ability to partake in daily life

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by Steve Bryson, PhD |

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Among caregivers of people with myasthenia gravis (MG) living in Northwest China, care burden rises with disease severity and the degree of the patient’s depression, a study reported.

According to its researchers, this is primarily driven by patients’ inability to participate more fully in household chores, and the increasing time that family members need to allocate to their care. Economic factors, like family income and treatment costs, also contributed to a high burden.

“Given the significant prevalence of these depressive symptoms, it is crucial to pay adequate attention to this matter,” the researchers wrote, noting that a previous study also noted MG symptom severity and depression as key factors in caregiver burden.

Findings were reported in the study, “Factors associated with the disease family burden of caregivers of myasthenia gravis patients in northwestern China: A cross-sectional study,” published in the Journal of Clinical Neuroscience.

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105 of study’s 178 myasthenia gravis patients had ‘potential’ for depression

MG is due to self-reactive antibodies the attack proteins involved in the communication between nerves and muscles, resulting in muscle weakness and fatigue. While most patients respond well to current disease treatments, up to 20% do not and continue to experience moderate to severe muscle weakness.

MG can impact a person’s ability to work and, in some cases, their ability to care for themselves, requiring a caregiver to help with daily activities. Still, the burden on caregivers and families of MG patients is often overlooked.

Researchers in Shaanxi Province conducted a study to explore the factors associated with the burden caregivers and patients’ families experience.

The study included 178 adults with MG, 101 of whom were women (56.7%); the group had a disease duration ranging from three months to 24 years (median of four years), and ages that ranged from 18 to 81. It also involved 178 caregivers, ages 25-78, including 96 who were women (53.9%).

Detailed disease records came from a MG database and the team distributed online questionnaires to both MG patients and their caregivers.

The caregivers’ family burden scale of disease (FBSD) questionnaire was used to evaluate caregiver burden across six domains: daily activities, physical and mental health, family member relationships, family economics, and entertainment activities. The higher the total FBSD score, the greater the burden.

Caregiver burden was evaluated as the proportion of those with scores above the average in a particular FBSD domain. Above-average scores reflected a heavier burden.

Difficulties with daily life chores seen to weigh most on caregivers

Overall, the median total FBSD score was 14, “indicating that caregivers experienced a moderate burden,” the scientists wrote.

Less than half of the respondents (44.9%) reported a heavier caregiver burden, with scores above the average.

The highest burden score was seen in the domain of daily activities (48.9% of the respondents), suggesting a “reduced ability of MG patients to engage in household chores and work due to their condition,” and “family members need to allocate time to care for the daily needs and recovery of MG patients.”

The next highest burden score was for economics (44.4% of the respondents), partly explained by the fact that “MG necessitates long-term medication to alleviate symptoms,” the researchers wrote.

This was followed by family entertainment (43.3% of the respondents). Family members’ mental health (40.5% of the respondents) and physical health (37.6% of the respondents), and their relationships (37.6% of the respondents), were the domains with the lowest caregiver burden scores.

In a statistical analysis, various demographic and clinical factors were found to associate with a heavier caregiver burden. These included MG duration, disease severity, patient or caregiver sex and education level, the family’s monthly income, and the degree of a patient’s depression, as assessed by the patient health questionnaire-9.

Most patients, 105 of the 173 (59%), had score of more than five on that health questionnaire, “indicating potential depressive symptoms,” the researchers noted. And 24 of them (13.48%) had scores higher than 15, indicating moderately severe or severe depression.

“In our clinical work, we have indeed observed a correlation between the symptoms, severity, and emotional state of MG patients,” they added.

Additional analyses indicated that disease severity, the degree of depression, and the family’s monthly income were independent factors significantly related to the burden of an MG caregiver.

“Caregivers of patients with MG have obvious disease family burdens, of which the family daily activity burden and family economic burden are the heaviest,” the researchers wrote.