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<article xmlns:mml="http://www.w3.org/1998/Math/MathML" xmlns:xlink="http://www.w3.org/1999/xlink" xmlns:xsi="http://www.w3.org/2001/XMLSchema-instance" xmlns:ali="http://www.niso.org/schemas/ali/1.0/" article-type="other" dtd-version="1.2" xml:lang="en"><front><journal-meta><journal-id journal-id-type="publisher-id">Pediatric Hematology/Oncology and Immunopathology</journal-id><journal-title-group><journal-title xml:lang="en">Pediatric Hematology/Oncology and Immunopathology</journal-title><trans-title-group xml:lang="ru"><trans-title>Вопросы гематологии/онкологии и иммунопатологии в педиатрии</trans-title></trans-title-group></journal-title-group><issn publication-format="print">1726-1708</issn><issn publication-format="electronic">2414-9314</issn><publisher><publisher-name xml:lang="en">Fund Doctors, Innovations, Science for Children</publisher-name></publisher></journal-meta><article-meta><article-id pub-id-type="publisher-id">376</article-id><article-id pub-id-type="doi">10.24287/1726-1708-2020-19-3-12-16</article-id><article-categories><subj-group subj-group-type="toc-heading" xml:lang="en"><subject>ORIGINAL ARTICLES</subject></subj-group><subj-group subj-group-type="toc-heading" xml:lang="ru"><subject>ОРИГИНАЛЬНЫЕ СТАТЬИ</subject></subj-group><subj-group subj-group-type="article-type"><subject></subject></subj-group></article-categories><title-group><article-title xml:lang="en">Description of health related quality of life of children and adolescents with hemophilia from India</article-title><trans-title-group xml:lang="ru"><trans-title>Description of health related quality of life of children and adolescents with hemophilia from India</trans-title></trans-title-group></title-group><contrib-group><contrib contrib-type="author"><name><surname>Dsouza</surname><given-names>A.</given-names></name><address><country country="IN">India</country></address><bio><p>Manipal</p></bio><email>anjeline.d@manipal.edu</email><xref ref-type="aff" rid="aff1"/></contrib><contrib contrib-type="author"><name><surname>Nayak</surname><given-names>D.</given-names></name><address><country country="IN">India</country></address><bio><p>Manipal</p></bio><xref ref-type="aff" rid="aff2"/></contrib><contrib contrib-type="author"><name><surname>Kurien</surname><given-names>A.</given-names></name><address><country country="IN">India</country></address><bio><p>Manipal</p></bio><xref ref-type="aff" rid="aff3"/></contrib><contrib contrib-type="author"><name><surname>Pai</surname><given-names>M. S.</given-names></name><address><country country="IN">India</country></address><bio><p>Manipal</p></bio><xref ref-type="aff" rid="aff4"/></contrib><contrib contrib-type="author"><name><surname>Nayak</surname><given-names>B. S.</given-names></name><address><country country="IN">India</country></address><bio><p>Manipal</p></bio><xref ref-type="aff" rid="aff1"/></contrib></contrib-group><aff id="aff1"><institution>Manipal College of Nursing Manipal Academy of Higher Education</institution></aff><aff id="aff2"><institution>TMA Pai Hospital, Udupi, Manipal Melaka Medical College, Manipal Academy of Higher Education</institution></aff><aff id="aff3"><institution>Manipal Melaka Medical College, Academy of Higher Education</institution></aff><aff id="aff4"><institution>Manipal Academy of Higher Education</institution></aff><pub-date date-type="pub" iso-8601-date="2020-09-08" publication-format="electronic"><day>08</day><month>09</month><year>2020</year></pub-date><volume>19</volume><issue>3</issue><issue-title xml:lang="en"/><issue-title xml:lang="ru"/><fpage>12</fpage><lpage>16</lpage><history><date date-type="received" iso-8601-date="2020-10-02"><day>02</day><month>10</month><year>2020</year></date><date date-type="accepted" iso-8601-date="2020-10-02"><day>02</day><month>10</month><year>2020</year></date></history><permissions><copyright-statement xml:lang="en">Copyright ©; 2025, «D. Rogachev NMRCPHOI»</copyright-statement><copyright-statement xml:lang="ru">Copyright ©; 2025, ФГБУ «НМИЦ ДГОИ им. Дмитрия Рогачева» Минздрава России</copyright-statement><copyright-year>2025</copyright-year><copyright-holder xml:lang="en">«D. Rogachev NMRCPHOI»</copyright-holder><copyright-holder xml:lang="ru">ФГБУ «НМИЦ ДГОИ им. Дмитрия Рогачева» Минздрава России</copyright-holder><ali:free_to_read xmlns:ali="http://www.niso.org/schemas/ali/1.0/"/><license><ali:license_ref xmlns:ali="http://www.niso.org/schemas/ali/1.0/">https://creativecommons.org/licenses/by/4.0</ali:license_ref></license></permissions><self-uri xlink:href="https://hemoncim.com/jour/article/view/376">https://hemoncim.com/jour/article/view/376</self-uri><abstract xml:lang="en"><p>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.</p></abstract><trans-abstract xml:lang="ru"><p>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.</p></trans-abstract><kwd-group xml:lang="en"><kwd>hemophilia</kwd><kwd>children</kwd><kwd>adolescents</kwd><kwd>Health related quality of life</kwd><kwd>Hаemo-QoL</kwd><kwd>India</kwd></kwd-group><kwd-group xml:lang="ru"><kwd>hemophilia</kwd><kwd>children</kwd><kwd>adolescents</kwd><kwd>Health related quality of life</kwd><kwd>Hаemo-QoL</kwd><kwd>India</kwd></kwd-group><funding-group><funding-statement xml:lang="ru">We thank Dr. Sylvia Von Mackenson, Professor of Psychology, Department of Medical Psychology, University Medical Centre Hamburg-Eppendorf, Hamburg,Germany for permitting us to use the tool and also guiding in interpretation of scores. We thank all children and adolescents with hemophilia who participated in the study. 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