Social determinants and health-related dimensions of quality of life in adult patients with haemophilia

Abstract

The availability of safe and effective factor replacement therapies, in persons with haemophilia (PWH), has in some countries answered the basic need for treatment of these patients. The findings suggest that adult patients who have always been on prophylaxis reported significantly better physical functioning, and thus better quality of life. This study is designed to evaluate the QoL in adult PWH, by focusing on social determinants of QoL and their relationship with health-related dimensions, in Tabriz, Iran. The survey instrument was a self-report 36 items questionnaire, 'A36 Hemofilia - QoL', which is a disease-specific questionnaire for the assessment of the health-related QoL in adults living with haemophilia. A total of 100 haemophilia A and B patients, aged over 17years participated in this study within 1year. QoL total score was 71.88 (+/- 26.89 SD). Patients who treat in our Hemophilia Treatment Center, had better QoL score (P=0.000), and education has a significant impact on the social aspects of QoL (P=0.18). The QoL was very poor in urban area in contrast to patients who lived in the city (54.45 vs. 74.21 respectively). Single patients have a better QoL than married patients (76.56 vs. 68.50 respectively). Our results showed that low education and lack of awareness of the diseases among PWH lead to reduce of QoL and more disease complications. More and wider treatment and psychological care for improving quality of life of these patients are seriously recommended.