Investigation and Analysis of the Current Status of Health-Related Quality of Life in Adolescents with Hemophilia in Hubei Province.

Abstract

Aims/Background Reliable health-related quality of life data are critical in developing countries, in order to advocate for government agencies to develop national hemophilia care programmes. This study aims to explore the current status and influencing factors of health-related quality of life among adolescents with hemophilia in Hubei Province, so as to provide empirical data for professionals. Methods A total of 84 children with hemophilia aged 8 to 18, who were registered in Tongji Hemophilia Treatment Center and Hubei Hemophilia Home, were selected using a cluster sampling method. The "General Situation Questionnaire of Hemophiliac Adolescents", designed by Tongji Hemophilia Treatment Center, and "the Chinese version of Canadian hemophilia outcomes-kid's life assessment tool (CHO-KLAT)", were used for this study conducted from June 1, 2022 to December 30, 2022. Results 82 completed questionnaires were included. The average age of the 82 adolescents was 13.04 ± 3.29 years and all were males. Among them, 67 were hemophilia A and 15 were hemophilia B. 61 cases were severe type, 19 were moderate type and 2 cases were mild type. The average total score of the CHO-KLAT for adolescents with hemophilia in Hubei Province was 49.49, which was lower than their counterparts in developed countries. The statistically significant influencing factors included residence, annual family income, and disease type. Conclusion This study provides empirical data support for the health management of adolescents with hemophilia, highlighting the importance of improving medical resource access, transfusion convenience, and psychological support in enhancing the quality of life for this group. The results emphasize the need for healthcare systems and policymakers to take specific measures to address these factors to improve the treatment and care conditions for adolescents with hemophilia.