TY - JOUR
T1 - Description of health related quality of life of children and adolescents with hemophilia from India
AU - Dsouza, Anjeline
AU - Nayak, D.
AU - Kurien, A.
AU - Pai, M. S.
AU - Nayak, B. S.
N1 - Funding Information:
The authors have no conflicts of interest to disclose. This paper was produced as a part of the Project titled “Identification, Diagnosis, Education, and Empowerment for Action” of the people with bleeding disorders in South India (IDEEA) funded by Novo Nordisk Hemophilia Foundation, Zurich, Switzerland. The funders had no role in the study design, data collection and analysis, decision to publish or preparation of the manuscript.
Publisher Copyright:
© 2020 by «D. Rogachev NMRCPHOI».
PY - 2020
Y1 - 2020
N2 - Hemophilia is a genetic disease that impairs quality of life due to its chronicity of nature where the individual will experience spontaneous bleeding or bleeding after an injury which requires frequent visits to the hospital for treatment. The objective of this study was to find the Health-related quality of life (HRQoL) of children and adolescents with moderate and severe hemophilia between 6 years and 16 years using the Haemo-QoL questionnaire. A prospective survey was carried out among 107 children and adolescents from two hemophilia treatment centers in Karnataka state. Approval was taken from the ethical committee. The data was analyzed using SPSS version 16.0. The mean age was 11.00 ± 2.98 years. Among the 107 participants, 89.70% had hemophilia A and 10.30% had hemophilia B. Moderate hemophilia was found among 54.20% participants and 45.80% had severe hemophilia. Overall, the HRQoL scores (55.41) were higher in the age group of 6–7 years compared to 8–12 years and 13–16 years. The mean HRQoL in the domain of family were: 77.84 ± 23.12 among 6–7 years, 66.00 ± 17.34 among the 8–12 years and 60.38 ± 16.72 among 13–16 years. Children demonstrated poor HRQoL in the domains of family and friends. The results indicate a need for continuous monitoring of QoL to identify better treatment methods.
AB - Hemophilia is a genetic disease that impairs quality of life due to its chronicity of nature where the individual will experience spontaneous bleeding or bleeding after an injury which requires frequent visits to the hospital for treatment. The objective of this study was to find the Health-related quality of life (HRQoL) of children and adolescents with moderate and severe hemophilia between 6 years and 16 years using the Haemo-QoL questionnaire. A prospective survey was carried out among 107 children and adolescents from two hemophilia treatment centers in Karnataka state. Approval was taken from the ethical committee. The data was analyzed using SPSS version 16.0. The mean age was 11.00 ± 2.98 years. Among the 107 participants, 89.70% had hemophilia A and 10.30% had hemophilia B. Moderate hemophilia was found among 54.20% participants and 45.80% had severe hemophilia. Overall, the HRQoL scores (55.41) were higher in the age group of 6–7 years compared to 8–12 years and 13–16 years. The mean HRQoL in the domain of family were: 77.84 ± 23.12 among 6–7 years, 66.00 ± 17.34 among the 8–12 years and 60.38 ± 16.72 among 13–16 years. Children demonstrated poor HRQoL in the domains of family and friends. The results indicate a need for continuous monitoring of QoL to identify better treatment methods.
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U2 - 10.24287/1726-1708-2020-19-3-12-16
DO - 10.24287/1726-1708-2020-19-3-12-16
M3 - Article
AN - SCOPUS:85092521916
SN - 1726-1708
VL - 19
SP - 12
EP - 16
JO - Pediatric Hematology/Oncology and Immunopathology
JF - Pediatric Hematology/Oncology and Immunopathology
IS - 3
ER -