Unveiling the Hidden Struggles of Hemophilia: A Comprehensive Cross-Sectional Study in South-India

Abstract

Background: Hemophilia is a rare genetic bleeding disorder characterized by delayed blood clotting due to deficiencies in clotting factors. Despite advancements in treatment, hemophilia poses significant health and social challenges for patients.

Objective: This study aims to investigate the profile and consequences of hemophilia among patients in Mangalore, India, focusing on their awareness, treatment, and quality of life.

Methods: A cross-sectional study was conducted among hemophilic patients attending Government Wenlock District Hospital, KMC Hospital Attavar, and members of the Hemophilia Federation (India). Data were collected using a semi-structured questionnaire and analyzed using SPSS version 25.0.

Results: The study included 69 male participants aged 20-58 years. Most participants (81.2%) were diagnosed within the first year of life. Hemophilia A was more prevalent (81.2%) than Hemophilia B (18.8%). Bleeding episodes occurred once or twice a month for most participants (84%). Regular exercise was reported by 76.8% of participants, and 10.1% reported physical impairment due to hemophilia. Blood transfusions were common (26.1%), with 5.8% affected by Hepatitis C due to transfusions. Preventive prophylaxis was used by 60.9% of participants when required. Satisfaction with welfare centers was neutral to fairly satisfied for most participants.

Conclusion: Hemophilia significantly impacts the lives of patients, highlighting the need for improved awareness, treatment accessibility, and support systems to enhance their quality of life.