A cross-sectional questionnaire-based study on quality of life in patients of hemophilia from Jamshedpur, Jharkhand

Abstract

Background: Haemophilia is a lifelong inherited bleeding disorder that can result in recurrent bleeding, pain, joint damage, restricted mobility, treatment dependence, and psychosocial distress. These consequences may substantially affect quality of life (QoL), particularly in settings where access to comprehensive haemophilia care is variable. This study assessed QoL and selected day-to-day concerns among people with haemophilia registered with the Haemophilia Society of India, Jamshedpur Chapter.
Methods: A registry-based, descriptive cross-sectional study was conducted among patients with documented haemophilia A or haemophilia B registered with the Haemophilia Society of India, Jamshedpur Chapter, Jharkhand, India. Data were collected from December 2024 to December 2025. Convenience sampling was used; 53 registered patients were approached, of whom 35 provided informed consent and were included in the quality-of-life analysis. Data were collected through interviewer-administered questionnaires in English or Hindi, according to participant preference and comprehension. Quality of life was assessed using the World Health Organization Quality of Life-BREF (WHOQOL-BREF) questionnaire. Domain scores for physical health, psychological health, social relationships, and environment were calculated according to the WHOQOL-BREF scoring protocol and transformed to a 0–100 scale, with higher scores indicating better perceived QoL. Descriptive statistics were used to summarise questionnaire responses and domain scores.
Results: Thirty-five participants had available WHOQOL-BREF scoring data. Only 6 participants (17.1%) rated their overall QoL as good or very good, and 10 (28.6%) reported being satisfied with their health; none reported being very satisfied with their health. Pain-related limitations were prominent, with 30 participants (85.7%) reporting that physical pain limited necessary activities to a moderate, very high, or extreme extent. In addition, 29 participants (82.9%) reported requiring medical treatment to function in daily life to a moderate, very high, or extreme extent. Dissatisfaction with sleep was reported by 11 participants (31.4%), while 22 participants (62.9%) reported experiencing negative feelings, including despair, anxiety, or depression, quite often, very often, or always. The physical-health domain had the lowest mean score (49.05 ± 13.94; n = 35), followed by psychological health (52.15 ± 8.66; n = 31) and environment (52.36 ± 13.43; n = 34). The social-relationships domain had the highest observed mean score (57.67 ± 14.22; n = 25), although this domain had the lowest number of valid responses.
Conclusion: Participants reported substantial pain-related functional limitation, dependence on medical treatment for daily functioning, and frequent negative emotional experiences. The findings support routine QoL assessment, pain evaluation, joint-health assessment, and psychosocial support as components of comprehensive haemophilia care. As this was a small, single-centre, cross-sectional study with incomplete clinical and demographic data, the findings should be interpreted descriptively and require confirmation in larger multicentre studies.