Factors associated with health-related quality of life in children with sickle cell disease
Intended for healthcare professionals
Evidence and practice    

Factors associated with health-related quality of life in children with sickle cell disease

Yusra Al Nasiri Assistant professor, Oman College of Health Sciences, Muscat, Oman
Eunice Lee Associate professor, University of California Los Angeles, Los Angeles CA, US
Adey Nyamathi Professor, Irvine University, Irvine CA, US
Mary-Lynn Brecht Adjunct professor, University of California Los Angeles, Los Angeles CA, US
Wendie Robbins Professor, University of California Los Angeles, Los Angeles CA, US
Adhra Al Mawali Head of quality assurance and planning, German University of Technology in Oman, Muscat, Oman
Omar Al Omari Associate professor, Sultan Qaboos University College of Nursing, Muscat, Oman
Eufemia Jacob Associate professor, University of California Los Angeles, Los Angeles CA, US

Why you should read this article:
  • To enhance your understanding of the effects of sickle cell disease

  • To recognise the factors that can affect quality of life in children with sickle cell disease

  • To consider ways in which the care of children with sickle cell disease could be improved

Background Sickle cell disease is an inherited haematological condition with life-threatening consequences. It can affect all aspects of the lives of children with the condition, including biopsychosocial and cognitive aspects. These children tend to have a low health-related quality of life (HRQoL).

Aim To identify factors associated with HRQoL in Omani children with sickle cell disease.

Method The study was a secondary analysis of data from a randomised controlled trial conducted with 72 parent-and-child dyads who were recruited from two tertiary hospitals in Oman. The aim of the original study was to examine the effects of an educational programme on the knowledge and self-efficacy of parents of children with sickle cell disease. As part of that study, parents and children completed two questionnaires on HRQoL, one generic and one specific to sickle cell disease.

Results Parents’ knowledge of sickle cell disease, parents’ self-efficacy in managing their child’s symptoms, parents’ age, children’s age and treatment with hydroxyurea were found to affect children’s HRQoL.

Conclusion Healthcare providers need to include biopsychosocial and cognitive aspects of HRQoL in their assessments of children with sickle cell disease. Programmes designed to enhance parents’ and children’s knowledge and self-efficacy, as well as measures designed to ensure that children receive treatment with hydroxyurea, are likely to improve the HRQoL of children with sickle cell disease.

Nursing Children and Young People. doi: 10.7748/ncyp.2023.e1448

Peer review

This article has been subject to open peer review and checked for plagiarism using automated software

@yusra444yusra

Correspondence

yusra444@gmail.com

Conflict of interest

None declared

Al Nasiri Y, Lee E, Nyamathi A et al (2023) Factors associated with health-related quality of life in children with sickle cell disease. Nursing Children and Young People. doi: 10.7748/ncyp.2023.e1448

Published online: 09 January 2023

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