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199590

Impact of Hemophilia on Health-Related Quality of Life in Pediatric Population

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Last updated: 03 Jan 2025

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Abstract

Background: The health-related quality of life (HRQoL) of patients with hemophilia is negatively affected by both the disease and treatment. Recurrent bleeding and resulting complications such as joint and muscle damage, and pain and disability, can significantly affect patients' HRQoL. Objective: This study aimed to improve the current status of health related quality of life (HR-QOL) in pediatric population with hemophilia using an Arabic version of (EQ-5D-5L and EuroQoL Egypt) questionnaire. Patients and Methods: This study was carried out during outpatient visits in the Department of Pediatrics Hematology and Oncology Unit at Zagazig University Children Hospital on 48 cases ranged from 4-16 years during the period from January 2021 to July 2021. Patients were divided equally into 2  groups; group I included 24 children from (4 to 10 years) had hemophilia A and Group II 24 children from (11 to 16 years) had hemophilia B. Results: In our study, it was found that most frequent manifestation in younger patients were hemarthrosis (70.8%) followed by epistaxis (62.5%) and bleeding after circumcision (60.4%), while in older patients, most frequent manifestation were hemarthrosis (87.5%) followed by bleeding after circumcision (75%), which reflects bad quality of life in older age group (10-16 years), which was attributed to frequent bleeding events and its complication. Conclusions: Subscale impairments, severity of hemophilia, barriers to hemophilia care, presence of support groups are factors that significantly affect and predict the QOL of Egyptian children with hemophilia. Addressing these concerns may amplify their understanding of the disease and further improve their quality of life.  

DOI

10.21608/ejhm.2021.199590

Keywords

Chronic pain, Hemophilia, pain management, Patient adherence, Prophylaxis

Authors

First Name

Ishtaiwi Elbahlul

Last Name

Ishtaiwi

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Email

priority11n@yahoo.com

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First Name

Nelly Raafat

Last Name

Abdelfatah

MiddleName

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Affiliation

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Email

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Orcid

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First Name

Mervat Atfy

Last Name

Mohammed

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First Name

Osama Rushdy

Last Name

Elsafy

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Volume

85

Article Issue

1

Related Issue

27163

Issue Date

2021-10-01

Receive Date

2021-10-14

Publish Date

2021-10-01

Page Start

3,407

Page End

3,412

Print ISSN

1687-2002

Online ISSN

2090-7125

Link

https://ejhm.journals.ekb.eg/article_199590.html

Detail API

https://ejhm.journals.ekb.eg/service?article_code=199590

Order

128

Type

Original Article

Type Code

606

Publication Type

Journal

Publication Title

The Egyptian Journal of Hospital Medicine

Publication Link

https://ejhm.journals.ekb.eg/

MainTitle

Impact of Hemophilia on Health-Related Quality of Life in Pediatric Population

Details

Type

Article

Created At

22 Jan 2023