Family burden and caregiver psychological stress in epidermolysis bullosa in China: a cross-sectional survey.

BACKGROUND

Epidermolysis Bullosa (EB) is a rare genetic skin disorder requiring long-term intensive care. The disease places considerable economic and caregiving burdens on families, yet factors associated with caregivers' psychological stress remain inadequately understood.

METHODS

A cross-sectional questionnaire survey was conducted among families of patients with EB. Statistical analysis was performed at the household level. In families with multiple affected individuals, the youngest patient was selected as the representative case, as Epidermolysis Bullosa is a rare inherited disorder that predominantly manifests in childhood. This approach was adopted to better reflect the caregiving burden associated with early-onset disease. Data were collected through an online questionnaire. The χ2 test was used for comparisons between groups, and ordered logistic regression analysis was performed to identify independent factors associated with high psychological stress among caregivers.

RESULTS

A total of 108 families of patients with EB were included. Children aged ≤6 years accounted for the largest proportion. Families with multiple patients accounted for 7.41%. In 40.74% of the families, the average annual out-of-pocket medical expenses exceeded 50% of the household annual income. In 24.07% of the families, the average daily caregiving time exceeded 4 h. The mean psychological stress score of caregivers was 3.40, and 43.52% reported high psychological stress (≥4 points). Univariate analysis showed that economic burden, caregiving time, and availability of nursing supplies were significantly associated with high psychological stress (p < 0.05). However, no statistically significant differences were observed in the ordered logistic regression analysis.

CONCLUSION

Families of patients with EB experience substantial caregiving and financial burdens. In univariate analyses, caregiving time and nursing supply were associated with caregivers' psychological stress; however, these variables were not independently significant in the multivariable model. The findings suggest the need for improved insurance coverage, caregiver support, and integrated nursing resources.