Health‐related quality of life among adults with haemophilia in China: A comparison with age‐matched general population

Abstract

Introduction:Evaluating health-related quality of life (HRQoL) is vital for informing the improvement of the overall health of people with haemophilia (PwH). While there is lacking such data in China and comparisons with the general population. Aim:To evaluate the HRQoL and its associated factors among adults with haemophilia, and compare it with a sample of the general population in China. Methods:PwH were recruited in this study using telephone-based interviews. Demographic and clinical characteristics were first collected. HRQoL was then evaluated using the self-reported Short Form 6-dimensions version 2 (SF-6Dv2) instrument. An age and gender-matched sample of the general population in China was also included as the comparator group. Linear regression was used to assess the association between the SF-6Dv2 utility value and the demographic and clinical variables of the patients.Results: This study included 206 PwH (mean [SD] age: 41.36 [14.48] years) and 206 respondents from the general population. PwH reported worse levels in physical functioning, role limitation, social functioning, and mental health dimensions on SF-6Dv2 than the general respondents. The mean (SD) utility of patients was .650 (.251), which was significantly lower than the general respondents (.786 [.183], P < .001). Being a student, having a higher monthly income, absence of comorbidities, having no target joints and requiring no treatment are independent predictors of a higher HRQoL for PwH. Conclusion:This study provides the first practical evidence of a significantly lower level of HRQoL in PwH than in the general population in China.

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“…Telephone‐based interviews were performed with 206 patients and an age and gender‐matched sample of the general population in China was also included as the comparator group. Patients with haemophilia reported worse levels of physical functioning, role limitation, social functioning, and mental health dimensions on SF‐6Dv2 than the general respondents 11 …”

“…Patients with haemophilia reported worse levels of physical functioning, role limitation, social functioning, and mental health dimensions on SF-6Dv2 than the general respondents. 11 To increase the awareness of haemophilia and facilitate the capacity-building of haemophilia centres in China, in collaboration with China Alliance for Rare Diseases, HTCCNC launched the China Haemophilia Center Assessment Project in 2020. In this project, haemophilia centres are classified into three levels: haemophilia comprehensive centre, haemophilia diagnosis and treatment centre, haemophilia treatment centre.…”