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Вопросы гематологии/онкологии и иммунопатологии в педиатрии

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

Аннотация

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 6-7years compared to 8-12 years and 13-16 years. The mean HRQoL in the domain of family were: 77.84±23.12 among 6-7years, 66.00±17.34 among the 8-12 years and 60.38± 16.72 among 13-16years. 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.

 

Об авторах

Anjalin Dsouza
Manipal College of Nursing MAHE Manipal
Индия


Dinesh Nayak
Professor of Paediatrics, Dr. TMA Pai Hospital, Udupi, Manipal Melaka Medical College, Manipal Academy of Higher Education
Индия


Annamma Kurien
Professor of Pathology, Manipal Melaka Medical College, Academy of Higher Education, Manipal, India
Индия


Mamatha Pai
Professor, Department of child health nursing, Manipal Academy of Higher Education, Manipal,
Индия


Baby Nayak
Professor, Department of child health nursing, Manipal College of Nursing Manipal, Manipal Academy of Higher Education, Manipal,


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Для цитирования:


., ., ., ., . . Вопросы гематологии/онкологии и иммунопатологии в педиатрии. 2020;19(3).

For citation:


Dsouza A., Nayak D., Kurien A., Pai M.S., Nayak B.S. Description of health related quality of life (HRQoL) of children and adolescents with hemophilia from India. Pediatric Hematology/Oncology and Immunopathology. 2020;19(3). (In Russ.)

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