The demographics, treatment characteristics and quality of life of adult people with haemophilia in China – results from the HERO study

Introduction Haemophilia management in China needs to be further developed. To further improve the quality of life (QoL) of people with haemophilia ( PWH ) in China, it is important to investigate the peculiarities of China as compared to other countries. Aim The primary objective of the Haemophilia Experiences, Results and Opportunities ( HERO ) project was to quantify the impact of key psychosocial factors affecting PWH . This article presents the demographics, treatment characteristics, and QoL of adult PWH in China as compared with the results of the other nine countries participating in the HERO study. Methods This was a web‐ (except in Algeria) and questionnaire‐based survey conducted in 10 countries. Results A total of 110 adult PWH from China and 565 from other countries completed the questionnaire. Compared with other countries, respondents in China reported: lower rate of employment (45.6% vs. 63.1%); lower percentages of being treated by prophylaxis (4.1% vs. 36.8%), being treated always at home (27.8% vs. 54.3%) and following treatment recommendation as instructed (6.2% vs. 40.5%); greater difficulty in obtaining replacement factor products (97.3% vs. 29.6%) and visiting their treatment centre (60.9% vs. 26.4%); more annual bleeds requiring treatment (mean: 29.4/year vs. 15.4/year); lower mean self‐evaluated disease control score (5.5 vs. 7.7), EQ ‐5D index (0.71 vs. 0.75) and visual analogue scale (7.1 vs. 7.5) scores. Employed PWH in China had a better self‐reported generic QoL than those unemployed. Conclusions The study suggests that there is a major need for further improvement of both medical care and ongoing psychosocial support for PWH in China.