Family burden of disease in pemphigus: a cross-sectional survey

Pemphigus is a rare, chronic, recurrent, and life-threatening autoimmune blistering skin disease that imposes a substantial burden on patients, their families, and society. However, information regarding the familial burden associated with pemphigus remains limited. This study aimed to assess the family burden experienced by caregivers of pemphigus patients and to identify relevant contributing factors. From December 2020 to December 2022, a total of 163 patient-caregiver dyads were enrolled in the study. Caregivers completed the Family Burden Scale of Diseases. Univariate logistic regression and multivariate logistic regression were utilized to explore factors influencing family burden. Among the 163 caregivers included in the study, the median Family Burden Scale score was 26 (IQR: 18-36), with 94 caregivers (57.7%) reporting moderate to severe family burden. In the multivariate logistic regression analysis, several factors were found to be significantly associated with family burden among pemphigus patients: medical insurance (adjusted odds ratio [aOR] 3.122, 95% confidence interval [CI] 1.749-5.574), disease type (aOR 0.201, 95% CI 0.050-0.803), Pemphigus Disease Area Index score (aOR 1.116, 95% CI 1.054-1.181), degree of disease severity (aOR 2.089, 95% CI 1.029-4.238), presence of comorbidities (aOR 3.712, 95% CI 1.378-9.999), and caregiver gender (aOR 3.244, 95% CI 1.258-8.362). This study confirms that pemphigus imposes a significant burden on families, highlighting the necessity for healthcare providers to develop and implement family-centered support programs aimed at alleviating this burden.