A qualitative exploration of health-related quality of life and health behaviours in children with sickle cell disease and healthy siblings

Sickle cell disease (SCD) can significantly impair the health-related quality of life (HRQOL) of children and adolescents. This review aimed to assess current evidence regarding the HRQOL of children and adolescents with SCD in the Middle East and North Africa region. A systematic search of various databases was conducted to identify relevant articles, including MEDLINE® (National Library of Medicine, Bethesda, Maryland, USA), Scopus® (Elsevier, Amsterdam, the Netherlands), Cumulative Index to Nursing and Allied Health Literature®, Masader (Oman Virtual Science Library, Muscat, Oman) and EBSCOhost (EBSCO Information Services, Ipswich, Massachusetts, USA). A total of 533 articles were identified; however, only 10 were eligible for inclusion in the final analysis. Results from these studies showed that children and adolescents with SCD had compromised HRQOL compared to their healthy peers, particularly in terms of physical, psychosocial, familial, financial and academic functioning. Therefore, interventions are necessary to improve overall HRQOL outcomes for this population. Keywords: Sickle Cell Disease; Health-Related Quality Of Life; Infants; Children; Adolescents; Middle East; North Africa.

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Double disadvantage: a case control study on health-related quality of life in children with sickle cell disease

Health and Quality of Life Outcomes ◽

10.1186/1477-7525-8-121 ◽

2010 ◽

Vol 8 (1) ◽

pp. 121 ◽

Cited By ~ 6

Author(s):

Channa T Hijmans ◽

Karin Fijnvandraat ◽

Jaap Oosterlaan ◽

Harriët Heijboer ◽

Marjolein Peters ◽

...

Keyword(s):

Quality Of Life ◽

Sickle Cell Disease ◽

Case Control Study ◽

Case Control ◽

Health Related Quality ◽

Cell Disease ◽

Related Quality ◽

Health Related ◽

Control Study

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Health Related Quality of Life of Children with Sickle Cell Anemia and Their Parents; Quantitative Study in Albaha; Saudi Arabia

Journal of Pharmaceutical Research International ◽

10.9734/jpri/2021/v33i27a31487 ◽

2021 ◽

pp. 9-17

Author(s):

Turki Alzahrani ◽

Raed Alzahrani ◽

Amer Alzahrani ◽

Abdullah Alzahrani ◽

Abdu Adawi ◽

...

Keyword(s):

Quality Of Life ◽

Saudi Arabia ◽

Sickle Cell Disease ◽

Sickle Cell ◽

Healthy Children ◽

Health Related Quality ◽

Cell Disease ◽

Related Quality ◽

Health Related

Aims: To gain a better understanding of the quality of life (QoL) of children and impact of this disease on parents QoL. Study Design: Cross-sectional study. Place and Duration of Study: The study was conducted in King Fahd Hospital, Albaha city, Albaha, Saudi Arabia, between March2020 and February 2021. Methodology: We included 95 responses. Two different tools were used for the purpose of this study. PedsQL™ Sickle Cell Disease Module was used to measure health-related quality of life (HRQoL) in healthy children and adolescents and those with acute and chronic health conditions. Moreover, PedsQL™ Family Information Form was completed by caregivers. Median and interquartile range were used for numerical variables since they were skewed. Bivariate analyses were carried out using non-parametrical tests and Pearson correlation. The prediction of QoL was accomplished through multivariate analysis. Results: A total of (95) responses were analyzed. Female respondents were 52.6%. The age median was 12 (IQR=10-14). Mothers represented the most frequent informant 46.3% in this current study. Significant association was found between QoL and certain independent factors, some of which is parental level of education (P< .001) and marital support (P< .001). Conclusion: Sickle cell disease (SCD) is a major condition accounts for a huge burden on variable levels. This study reported that low QoL among children affected by SCD. Higher education and current marital status of the parents were significantly associated with high QoL in SCD patients. Number of workdays affected due to child health was significantly correlated with low QoL.

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