Describing the quality of life of boys with haemophilia in China: Results of a multicentre study using the CHO‐KLAT

Abstract

Introduction The treatment of haemophilia varies across countries and across regions within some countries. Similar variation has been observed in health‐related quality of life (HR‐QoL). Relatively little is known about the HR‐QoL of boys with haemophilia in China. Aim The aim of this study was to describe the HR‐QoL of boys with haemophilia in China using the Canadian Haemophilia Outcomes‐Kids Life Assessment Tool (CHO‐KLAT). Methods Boys (4‐18 years of age) with haemophilia and their parents were enroled in a cross‐sectional study. All parents/guardians of study subjects were requested to complete a CHO‐KLAT questionnaire during a clinic visit, and report on several other clinical and socioeconomic factors in the past year. Boys who were > 7 years also completed the CHO‐KLAT. Results A total of 269 parents of boys with haemophilia, from 13 hospitals in 12 provinces, were enroled during 2014. The boys ranged from 4.0 to 17.9 years of age; 91% had haemophilia A, most had moderate (52%) or severe (36%) disease, and most were receiving sub‐optimal on‐demand therapy or low‐dose prophylactic therapy. Child self‐report CHO‐KLAT scores were available for 171 boys ≥7 years of age and ranged from 24.2 to 85.3 with a mean of 57.6 (n = 171). Parent proxy‐reported CHO‐KLAT scores ranged from 25.0 to 88.7 with a mean of 55.1 (n = 269). Conclusion HR‐QoL scores in boys with haemophilia in China were substantially lower than reported from Canadian and European boys with haemophilia. Longer term prospective studies are required to examine the factors impacting the HR‐QoL for boys with haemophilia in China.

Health-related quality of life in children with haemophilia in China: a 4-year follow-up prospective cohort study

“…Mean value of CHO-KLAT parent proxy reports (64.69, SD = 13.71) was similar to child self-reports (65.33, SD = 15.78) without statistically significant differences. This result is comparable to the study of L. Tang et al in China [16], but the scores were significantly lower than reported scores in developed countries such as Canada [18](75.4, SD = 12.0), Germany (71.5, SD = 13.3), France (76.7, SD = 9.7), Spain (78.4, SD = 10.8) and the Netherlands (82.8, SD = 8.4) [14], where prophylaxis is taken as the standard treatment of haemophilia with severe haemophilia. This difference indicates that economic development may have a considerable effect on the QoL of haemophilia.…”

“…The concept of HRQoL was raised decades ago in haemophilia [7–10], and recent research outcomes emphasize the importance of considering HRQoL issues during decision making procedures surrounding the treatment of haemophilia [11–16]. HRQoL assessment provides a comprehensive vision of the patients’ subjective feelings of function and well-being, and supports evaluation of therapeutic effect [10, 13, 16]. The Canadian Haemophilia Outcomes–Kids’ Life Assessment Tool (CHO-KLAT) is a well-known disease-specific measure of HRQoL for childhood haemophilia patients [8, 17, 18].…”

“…The Canadian Haemophilia Outcomes–Kids’ Life Assessment Tool (CHO-KLAT) is a well-known disease-specific measure of HRQoL for childhood haemophilia patients [8, 17, 18]. Socio-Economic Context (SEC) module is a questionnaire aiming at capturing the impact of social economic context on individual families [16]. We used the two measures to evaluate patients’ HRQoL and explore the effect different local governments and types of insurance coverage have on haemophilia families [15].…”

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

“…[10][11][12][13][14] In studies including Chinese patients, most of them only focused on specific groups such as children or patients with inhibitors. 15,16 Only one study in 2004 investigated the quality of life of the Chinese adults with haemophilia and compared it with that of the general population. 17 This study demonstrated PwH experienced significantly lower levels of HRQoL compared with the general population.…”

“…The HRQoL among PwH has been previously studied in several countries, such as the US, Brazil, Iran, Korea and Sweden 10–14 . In studies including Chinese patients, most of them only focused on specific groups such as children or patients with inhibitors 15,16 . Only one study in 2004 investigated the quality of life of the Chinese adults with haemophilia and compared it with that of the general population 17 .…”