HEALTH-RELATED QUALITY OF LIFE IN CHILDREN AND ADOLESCENTS WITH HEMOPHILIA A- A SINGLE CENTER STUDY FROM VIETNAM
Author(s)
Mai H1, Nguyen TT2, Truong AT3
1University of Medicine and Pharmacy in HCMC, Ho Chi Minh City, SG, Vietnam, 2University of Medicine and Pharmacy in HCMC, Ho Chi Minh City, Viet Nam, 3Children's Hospital 1, Ho Chi Minh City, Viet Nam
OBJECTIVES: Hemophilia A (HA) is an inherited disease, characterized a deficiency of factor VIII. Despite of low incidence, HA usually involves repeated bleeding episodes which can lead to joint damage and negatively impact on health-related quality of life (HR-QoL) of patients. In Vietnam, the findings in this topic is limited. This analysis aimed to assess the HR-QoL in children and adolescents with HA and influential factors on their HR-QoL. METHODS: Cross-sectional study was conducted to assess HR-QoL in all children and adolescents of HA, hospitalized at Children’s Hospital 1. Face-to-face interview with patients and their parents has been conducted using PedsQL 4.0 SF-15 questionnaire from January to June 2018. Data were analyzed in SPSS using relevant statistical test with 95% confidence level. RESULTS: Study sample of 126 patients with the mean age of 10.8 ± 4.0 years has chosen for study and classified into 3 groups, including 5-7 years (27.8%), 8-12 years (32.5%) and 13-18 years (39.7%). 50.8% of patients had severe disease status, 65.9% had bleeds occurred into joint with average disease duration of 9.67 ± 4.33 years and average treatment period of 4.6 ± 4.3 days. The mean PedsQL scores were assessed from both patients and parents with 64.9 ± 15.7 and 64.0 ± 16.5, respectively in group 5-7 years, 58.6 ± 17.1 and 56.1 ± 17.0 in group 8-12 years; 53.7 ± 15.5 and 51.2 ± 14.7 in group 13-18 years. Age, disease duration, education level were associated with the HR-QoL of patients from both patients and parents’ report, site of bleeding was associatied with HR-QoL from patients' report. CONCLUSIONS: Hemophilia A has moderate impact on HRQoL of children and adolescents with more impact on the physical health than psychosocial health. Age, disease duration, education level and site of bleeding are influencing factors on HR-QoL.
Conference/Value in Health Info
2018-11, ISPOR Europe 2018, Barcelona, Spain
Value in Health, Vol. 21, S3 (October 2018)
Code
PSY221
Topic
Patient-Centered Research
Topic Subcategory
Patient-reported Outcomes & Quality of Life Outcomes
Disease
Systemic Disorders/Conditions