Family Burden and Caregiver Stress in Epidermolysis Bullosa Patients in China

108 families of patients with Epidermolysis Bullosa in China participated in a cross-sectional survey. The mean psychological stress score of caregivers was 3.40, with 43.52% reporting high stress. Haoran Kong authored this dataset, which was last updated on May 14, 2026.

Use Cases

• Analyze the correlation between out-of-pocket medical expenses and caregiver stress based on economic burden data.
• Model predictors of high psychological stress based on caregiving time and nursing supply availability.
• Assess the prevalence and impact of multi-patient families on caregiving burden for rare genetic disorders.

Strengths

• Includes data from 108 families, providing a sample for a rare disease study.
• Reports specific metrics: 40.74% of families had medical expenses exceeding 50% of income, and 24.07% provided over 4 hours of daily care.
• Uses statistical methods including χ² tests and ordered logistic regression for analysis.

Limitations

• Row count and column-level documentation are unknown, requiring manual inspection after download.
• Data is limited to a single cross-sectional survey in China, which may limit generalizability.
• The dataset is small at 114.4 KB, indicating limited scope.

Provenance

Source

Haoran Kong via figshare.

Collection Method

Cross-sectional questionnaire survey conducted online.

Freshness

Last updated 2026-05-14 05:34:10; freshness should be verified.

Geography

China