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The Quality of Life in Children with Hemophilia in Bali

Received: 4 March 2020     Accepted: 15 September 2020     Published: 11 November 2020
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Abstract

Hemophilia in children adversely affects both their psychological as well as their physical health. It is important to understand more about the quality of life (QoL) in this patient population. The aim of this study was to assess health-related QoL of children with hemophilia in Bali. A cross sectional study was carried out on children with hemophilia in Bali. Data on the quality of life was collected through questionnaires using PedsQL Generic Core Scales version 4.0 inventory. Independent t test was used to analysis data. Child reports showed mean score on each domain function (physical, emotional, social and school function) in hemophilia group compared to healthy children group were 71.8 vs 97.9, 81.4 vs 94.5, 85.0 vs 97.5, and 73.1 vs 94.5, respectively. Parent-proxy reports showed mean scores on each domain function (physical, emotional, social, and school function) in hemophilia group compared to healthy children group were 73.3 vs 97.3, 79.5 vs 94.5, 80.2 vs 97.5, and 67.4 vs 89.8, respectively. Total PedsQL score in hemophilic children and healthy group showed a significant difference in both reports (child report; p<0.05, with the mean difference was -18.7 with 95% CI of -25.9 to -13.6 and parent-proxy report; p<0.05 the mean difference was -19.8 with 95% CI of -25.9 to -13.5). Hemophilia has a negative impact on the children’s daily life. Hemophilia group reported poor quality of life as regards the physical, emotional, social, school functioning domains, and total quality of life than healthy children group.

Published in American Journal of Pediatrics (Volume 6, Issue 4)
DOI 10.11648/j.ajp.20200604.22
Page(s) 459-462
Creative Commons

This is an Open Access article, distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution and reproduction in any medium or format, provided the original work is properly cited.

Copyright

Copyright © The Author(s), 2020. Published by Science Publishing Group

Keywords

Children, Hemophilia, Quality of Life

References
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[2] Haffman R, Benz EJ, Shattil SJ. Hematology Basic Principles and Practice. 5th edition. Philadelphia: Churchill Livingstone. 2009.
[3] Salek S, Boban A, Pulanic D. Characteristics of older patient with haemophilia. Hemophilia. 2012: 112-30.
[4] Acharya, S. Hemostasis disorder. In: Lanzkowsky P, editor. Manual of pediatric hematology and oncology. 5th edition. London: Elsevier; 2011: 378-418.
[5] Fischer K, van der Bom JG, van den Berg HM. Health-related quality of life as outcome parameter in haemophilia treatment. Haemophilia. 2003; 9: 75-81.
[6] WHOQOL Group. Development of the WHOQOL: rationale and current status. Int J Mental Health. 1994; 23: 24-56.
[7] Taha MY and Hassan MK. Health-related quality of life in children and adolescents with hemophilia in Basra, Southern Iraq. J Pediatr Hematol Oncol. 2014; 3: 179-84.
[8] Varni JW, Seid M, Rode CA. The PedsQL: measurement model for the pediatric quality of life inventory. Med Care. 1999; 37: 126-39.
[9] Badan Pusat Statistik Propinsi Bali. 2017 (cited 16 August 2017). Available from http://www.bali.bps.go.id.
[10] Poon JL, Zhou ZY, Doctor JN, Wu J, Ullman MM, Ross C et al. Quality of life in haemophilia A: Hemophilia tilization group study Va (HUGS-Va). Haemophilia. 2012; 1-9.
[11] Varni JW, Burnwinkle TM, Seid M. The PedsQL 4.0 as a school population healthmeasure: feasibility, reliability, and validity. Quality of Life Research. 2006; 15: 203-15.
[12] Varni JW, Limbers CA, Burwinkle TM. Impaired health-related quality of life in children and adolescents with chronic conditions: a comparative analysis of 10 disease clusters and 33 disease categories/severities utilizing the PedsQL 4.0 Generic Core Scales. Health Qual Life Outcomes. 2007; 5: 43.
[13] Huang IC, Thompson LA, Chi YY, Knapp CA, Revicki DA, Seid M, et al. The linkage between pediatric quality of life and health conditions: establishing clinically meaningful cutoff scores for the PedsQL. Value Health. 2009; 12: 773-81.
[14] Maricela OG, Georgina BR, Miguel IZ. Quality of life perceived by pediatric hemophilia patients and their parents in Mexico. Hemophilia Federation of Mexico. 2012; 15: 233-40.
[15] Bullinger M, von Mackensen S. Psycho-social determinants of quality of life in children and adolescents with hemophilia-a cross-cultural approach. Clini Psychol Psychother. 2008; 15: 164-72.
[16] Tantawy AAG, von Mackensen S, Labib JH, Moftah F, Mansour WAA. Health-related quality of life in Egyptian children and adolescents with hemophilia A. Pediatric Hematology and Oncology. 2011; 28: 222-9.
[17] Mercan A, Sarper N, Inanir M, Mercan HI, Gokalp AS, Zengin E. Hemophilia-specific quality of life index (Haemo-QoL and Haem-A-QoL questionnaires) of children and adults: result of single center from Turkey. Pediatric Hematology and Oncology. 2010; 27: 449-61.
[18] Von Mackensen S. Quality of life and sports activities in patients with haemophilia. Haemophilia. 2007; 13: 38-43.
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Cite This Article
  • APA Style

    I Gusti Ayu Trisna Windiani, Putu Antara, Soetjiningsih, I Gusti Agung Ngurah Sugitha Adnyana, Ketut Ariawati. (2020). The Quality of Life in Children with Hemophilia in Bali. American Journal of Pediatrics, 6(4), 459-462. https://doi.org/10.11648/j.ajp.20200604.22

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    ACS Style

    I Gusti Ayu Trisna Windiani; Putu Antara; Soetjiningsih; I Gusti Agung Ngurah Sugitha Adnyana; Ketut Ariawati. The Quality of Life in Children with Hemophilia in Bali. Am. J. Pediatr. 2020, 6(4), 459-462. doi: 10.11648/j.ajp.20200604.22

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    AMA Style

    I Gusti Ayu Trisna Windiani, Putu Antara, Soetjiningsih, I Gusti Agung Ngurah Sugitha Adnyana, Ketut Ariawati. The Quality of Life in Children with Hemophilia in Bali. Am J Pediatr. 2020;6(4):459-462. doi: 10.11648/j.ajp.20200604.22

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  • @article{10.11648/j.ajp.20200604.22,
      author = {I Gusti Ayu Trisna Windiani and Putu Antara and Soetjiningsih and I Gusti Agung Ngurah Sugitha Adnyana and Ketut Ariawati},
      title = {The Quality of Life in Children with Hemophilia in Bali},
      journal = {American Journal of Pediatrics},
      volume = {6},
      number = {4},
      pages = {459-462},
      doi = {10.11648/j.ajp.20200604.22},
      url = {https://doi.org/10.11648/j.ajp.20200604.22},
      eprint = {https://article.sciencepublishinggroup.com/pdf/10.11648.j.ajp.20200604.22},
      abstract = {Hemophilia in children adversely affects both their psychological as well as their physical health. It is important to understand more about the quality of life (QoL) in this patient population. The aim of this study was to assess health-related QoL of children with hemophilia in Bali. A cross sectional study was carried out on children with hemophilia in Bali. Data on the quality of life was collected through questionnaires using PedsQL Generic Core Scales version 4.0 inventory. Independent t test was used to analysis data. Child reports showed mean score on each domain function (physical, emotional, social and school function) in hemophilia group compared to healthy children group were 71.8 vs 97.9, 81.4 vs 94.5, 85.0 vs 97.5, and 73.1 vs 94.5, respectively. Parent-proxy reports showed mean scores on each domain function (physical, emotional, social, and school function) in hemophilia group compared to healthy children group were 73.3 vs 97.3, 79.5 vs 94.5, 80.2 vs 97.5, and 67.4 vs 89.8, respectively. Total PedsQL score in hemophilic children and healthy group showed a significant difference in both reports (child report; p<0.05, with the mean difference was -18.7 with 95% CI of -25.9 to -13.6 and parent-proxy report; p<0.05 the mean difference was -19.8 with 95% CI of -25.9 to -13.5). Hemophilia has a negative impact on the children’s daily life. Hemophilia group reported poor quality of life as regards the physical, emotional, social, school functioning domains, and total quality of life than healthy children group.},
     year = {2020}
    }
    

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  • TY  - JOUR
    T1  - The Quality of Life in Children with Hemophilia in Bali
    AU  - I Gusti Ayu Trisna Windiani
    AU  - Putu Antara
    AU  - Soetjiningsih
    AU  - I Gusti Agung Ngurah Sugitha Adnyana
    AU  - Ketut Ariawati
    Y1  - 2020/11/11
    PY  - 2020
    N1  - https://doi.org/10.11648/j.ajp.20200604.22
    DO  - 10.11648/j.ajp.20200604.22
    T2  - American Journal of Pediatrics
    JF  - American Journal of Pediatrics
    JO  - American Journal of Pediatrics
    SP  - 459
    EP  - 462
    PB  - Science Publishing Group
    SN  - 2472-0909
    UR  - https://doi.org/10.11648/j.ajp.20200604.22
    AB  - Hemophilia in children adversely affects both their psychological as well as their physical health. It is important to understand more about the quality of life (QoL) in this patient population. The aim of this study was to assess health-related QoL of children with hemophilia in Bali. A cross sectional study was carried out on children with hemophilia in Bali. Data on the quality of life was collected through questionnaires using PedsQL Generic Core Scales version 4.0 inventory. Independent t test was used to analysis data. Child reports showed mean score on each domain function (physical, emotional, social and school function) in hemophilia group compared to healthy children group were 71.8 vs 97.9, 81.4 vs 94.5, 85.0 vs 97.5, and 73.1 vs 94.5, respectively. Parent-proxy reports showed mean scores on each domain function (physical, emotional, social, and school function) in hemophilia group compared to healthy children group were 73.3 vs 97.3, 79.5 vs 94.5, 80.2 vs 97.5, and 67.4 vs 89.8, respectively. Total PedsQL score in hemophilic children and healthy group showed a significant difference in both reports (child report; p<0.05, with the mean difference was -18.7 with 95% CI of -25.9 to -13.6 and parent-proxy report; p<0.05 the mean difference was -19.8 with 95% CI of -25.9 to -13.5). Hemophilia has a negative impact on the children’s daily life. Hemophilia group reported poor quality of life as regards the physical, emotional, social, school functioning domains, and total quality of life than healthy children group.
    VL  - 6
    IS  - 4
    ER  - 

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Author Information
  • Department of Child Health, Udayana University School of Medicine, Sanglah Hospital, Denpasar, Indonesia

  • Department of Child Health, Udayana University School of Medicine, Sanglah Hospital, Denpasar, Indonesia

  • Department of Child Health, Udayana University School of Medicine, Sanglah Hospital, Denpasar, Indonesia

  • Department of Child Health, Udayana University School of Medicine, Sanglah Hospital, Denpasar, Indonesia

  • Department of Child Health, Udayana University School of Medicine, Sanglah Hospital, Denpasar, Indonesia

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