Health-related quality of life of patients with haemophilia: a cross-sectional survey in the Northeast of China

Abstract

IntroductionHaemophilia is a hereditary, chronic and haemorrhagic disorder caused by a deficiency in coagulation factors. Long-term spontaneous bleeding of joints and soft tissues can seriously affect the quality of life of patients.ObjectiveThe study aimed to assess the health-related quality of life (HRQoL) of patients with haemophilia and associated factors.MethodsA snowball sampling strategy was adopted to select study participants. Eligible participants were those who were 18 years or older and had mild, moderate or severe haemophilia. They were asked to self-complete a questionnaire, collecting data regarding their sociodemographic characteristics, target joint status and HRQoL measured by the EQ-5D-5L(a tool developed by the European quality of life (EuroQol) Group).ResultsThe respondents reported a mean EQ-5Dutility(country-specific valuesets for the EQ-5D-5L) score of 0.51 (SD=0.34). Those with severe haemophilia had a lower utility score than those with mild/moderate haemophilia (0.46±0.37 vs 0.56±0.30, p=0.737). The linear regression analyses showed that older age (>25 years), two or more target joints, not working, low levels of knowledge of the disease and borrowing money to pay for medical treatments were associated with lower EQ-5Dutility scores.ConclusionLow HRQoL of patients with haemophilia is evident in China. Social support needs to be strengthened to address this issue.

Health‐related quality of life in patients with multiple system atrophy using the EQ‐5D‐5L

“…The mean EQ‐5D‐5L index value (.558) and the mean EQ VAS score (59.5) of patients with MSA were lower than those of the Chinese healthy population (.943, 82.9) and those of similarly aged patients with coronary heart disease (.930, 71.13) and colorectal cancer (.617, no result for EQ VAS score) but were higher than those of Chinese patients with atrial fibrillation (.53, no result for EQ VAS score) and hemophilia (.51, 48.05) (Huang et al., 2018 ; Mei et al., 2021 ; Niu et al., 2022 ; Wang et al., 2018 ; Yang, Busschbach, Liu, & Luo, 2018 ). The mean index value (.558) and the mean EQ VAS score (59.5) in the current study were higher than the results of the European study using EQ‐5D‐3L (0.3 and 44.5, .29 and 53.3) (Higginson et al., 2012 ; Schrag et al., 2006 ).…”

Treatment Adherence and Health-Related Quality of Life in Patients with Hemophilia in Hong Kong

“…Although our exploratory analysis showed satisfactory reliability and item-scale correlation, the psychometric properties of the Haem-A-QoL, Haemo-QOL-SF and VERITAS-Pro might not sufficiently measure the variables of interest in our Chinese population. Future study should also consider using other validated tools, such as the widely used HRQoL tool EQ-5D [ 5 , 10 ], to facilitate comparison of outcomes across multinational studies. Despite these limitations, this study has achieved its aim of generating preliminary evidence on clinical factors associated with poor treatment adherence and their impact on HRQoL in Chinese patients with hemophilia in Hong Kong.…”

“…The suboptimal treatment of hemophilia may lead to long-term irreversible joint deformities and muscle atrophy, resulting in limitations to daily activities and physical functioning [ 4 , 5 , 6 ]. As most patients with hemophilia require lifelong management of their conditions and complications, studies showed that they tend to have impaired functional status, frequent hospitalization or absenteeism from school or work, and a compromised health-related quality of life (HRQoL) [ 2 , 5 , 6 , 7 , 8 , 9 , 10 , 11 ].…”

Health-related quality of life and its associated factors among hemophilia patients: experience from Ethiopian Hemophilia Treatment Centre

“…Most hemophilic patients experience repeated joint hemorrhage that causes unbearable joint pain, impairment, and deformity, resulting in a significant negative impact on their HRQoL [ 15 ]. This illustrates that clinical assessment alone may not be sufficient to characterize the morbidity associated with hemophilia, and it is necessary to measure patient-reported HRQoL and the factors associated with reduced HRQoL [ 16 , 17 ]. Previous studies identified two target joint involvement, the frequency of joint pain, and the occurrence of joint surgery as independent predictors of lower HRQoL in hemophilia patients [ 17 , 18 ].…”

“…This illustrates that clinical assessment alone may not be sufficient to characterize the morbidity associated with hemophilia, and it is necessary to measure patientreported HRQoL and the factors associated with reduced HRQoL [16,17]. Previous studies identified two target joint involvement, the frequency of joint pain, and the occurrence of joint surgery as independent predictors of lower HRQoL in hemophilia patients [17,18]. Similarly, the presence of arthropathy, frequency of bleeding episodes, and mode of treatment administration (ondemand vs. prophylaxis) significantly decreased HRQoL in patients with hemophilia [16,[19][20][21][22].…”