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), 2024. Published by Science Publishing Group

Keywords

Children, Hemophilia, Quality of Life

References

[1]	Centers for Disease Control and Prevention Hemophilic, Data and Statistics. 2011 (cited 14 April 2013). Available from http://www.cdc.gov/ncbddd/hemophilia/facts.html.
[2]	Haffman R, Benz EJ, Shattil SJ. Hematology Basic Principles and Practice. 5^th 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. 5^th 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.
[19]	Broderick CR, Herbert RD, Latimer J. Curtins JA. Fitness and quality of life in children with haemophilia. Haemophilia. 2010; 16: 118-23.
[20]	Espaldon AMD and Hernandes FG. Health-related quality of life assessment in Filipino children with hemophilia aged 4 to 16 years in a tertiary hospital. J Hematol Thromb Dis. 2014; 2: 133-9.

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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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