Assessing stigma in a predominantly male hemophilia population: a Chinese cross-sectional study

Hemophilia is a rare hereditary disorder characterized by impaired blood clotting, with prevalence of 2.73 per 100,000 individuals in China. Advancements in medical technology have significantly improved patient survival, however, individuals with hemophilia continue to experience chronic pain, recurrent joint hemorrhages, and functional impairments, particularly in the limbs. These physical challenges often lead to psychological issues such as anxiety and depression, contributing to heightened stigma. This study aimed to assess the current level of stigma among patients with hemophilia and to identify associated influencing factors.

Convenience sampling was applied to recruit patients from a hemophilia treatment center. As hemophilia predominantly affects males, the sample consisted of 231 males and one female (consistent with epidemiological sex ratios in China). The Social Impact Scale (SIS; 24 items, score range: 24-96, higher scores = greater stigma) and the Social Support Rating Scale (SSRS; 10 items, score range: 12-66, higher scores = greater support) were used to assess stigma and social support, respectively. Multiple linear regression was employed to analyze factors associated with stigma.

The mean total stigma score among hemophilia patients was 63.88 ± 15.27. Multiple linear regression revealed that higher social support (β = -0.69, 95% CI [-0.92, -0.47], P < 0.001) and being married (β = -6.17, 95% CI [-10.06, -2.28], P = 0.002) were associated with lower stigma, whereas more frequent bleeding episodes (β = 7.79, 95% CI [2.04, 13.54], P = 0.008) and lower limb disability (β = -6.11, 95% CI [-9.86, -2.36], P = 0.002) were associated with higher stigma. Lower monthly income was also linked to increased stigma (β = -1.85, 95% CI [-3.58, -0.12], P = 0.036). These variables explained 28.9% of the total variation of the total stigma score.

Stigma among patients with hemophilia is at a moderate to severe level. Targeted interventions should be prioritized for unmarried patients, those facing financial hardship, individuals with lower limb disabilities, and those experiencing frequent bleeding episodes. Enhancing psychological health education and social support is essential in mitigating stigma among hemophilia patients.