Description of health related quality of life of children and adolescents with hemophilia from India

Dsouza, A and Nayak, Dinesh M and Kurien, Annamma and Pai, Mamatha Shivananda and Nayak, Baby S (2020) Description of health related quality of life of children and adolescents with hemophilia from India. Pediatric Hematology/Oncology and Immunopathology, 19 (3). pp. 12-16. ISSN 1726-1708

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Abstract

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 mong 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

Item Type: Article
Uncontrolled Keywords: hemophilia; children;adolescents; Health related quality of life; Hаemo-QoL;India
Subjects: Medicine > MMMC Manipal > Pathology
Nursing > MCON Manipal > Child Health
Depositing User: KMC Library
Date Deposited: 27 Jan 2021 12:02
Last Modified: 27 Jan 2021 12:02
URI: http://eprints.manipal.edu/id/eprint/156261

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