Knowledge of Haemophilia and Inherited Bleeding Disorders Among Patients and Caregivers in Libya: A Cross-Sectional Study

Abstract

Background: Hemophilia and other inherited bleeding disorders require comprehensive patient

and caregiver knowledge for optimal self-management. In Libya, although epidemiological data exist, the actual level of disease-specific knowledge among affected families has not been measured. This study aimed to assess knowledge of hemophilia and Inherited bleeding disorders among Libyan patients and their caregivers and to identify associated factors. Methods: A cross-sectional study was conducted from December 2025 to March 2026. A structured Arabic questionnaire, adapted from previously validated instruments and pilot-tested, was administered to 67 participants (38 patients aged ≥15 years and 29 caregivers of paediatric patients were included) recruited through the Libyan Hemophilia Association. The questionnaire included 15 knowledge items (score 0–15). Knowledge levels were classified as none (0), low (1–6), fair (7–11) or good (12–15). Chi-square tests, t-tests, analysis of variance and multiple linear regression were used. Results: Overall, 40.3% had no knowledge, 28.4% low, 17.9% fair and 13.4% good knowledge. The mean score was 5.8 ± 4.0 out of 15. Patients scored higher than caregivers (6.3 ± 4.1 vs. 5.2 ± 3.8; p = 0.24). Higher education was significantly associated with better knowledge (p = 0.01). The poorest understood areas were inheritance (34.3% correct), chronic nature (41.8%), curability (43.3%) and first aid (47.8%). Physicians were the main information source (43.3%). Conclusions: The findings suggest significant knowledge gaps among the surveyed Libyan patients and caregivers, especially regarding genetics and emergency management. Targeted educational interventions are urgently needed.