The Quality of Life in Children with Hemophilia in Bali

I Gusti Ayu Trisna Windiani; Putu Antara; Soetjiningsih; I Gusti Agung Ngurah Sugitha Adnyana; Ketut Ariawati

doi:doi:10.11648/j.ajp.20200604.22

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The Quality of Life in Children with Hemophilia in Bali

I Gusti Ayu Trisna Windiani, Putu Antara, Soetjiningsih, I Gusti Agung Ngurah Sugitha Adnyana, Ketut Ariawati

Published in American Journal of Pediatrics (Volume 6, Issue 4)

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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[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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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

I Gusti Ayu Trisna Windiani

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

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

Department of Child Health, Udayana University School of Medicine, Sanglah Hospital, Denpasar, Indonesia
I Gusti Agung Ngurah Sugitha Adnyana

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

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

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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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