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Quality of life assessment for children with sickle cell disease (SCD) in Mecca region

Emad Abdulaziz Alharbi, Roa'a Faiz Alamri, Ebtisam Saud AlJerayan, Hadeel Suliman Salawati, Shroog Mohammad Al-Mjershi.


Background: Sickle cell disease (SCD) is an autosomal recessive condition characterized by production of abnormal hemoglobin S and is related to high morbidity and mortality. It also affects the quality of life (QOL) of patients and their relatives/caregivers.

Objective: To assess QOL for children with sickle cell anemia.

Materials and Methods: This descriptive study was conducted in pediatric hematological departments in selected hospitals at Makkah Al-Mukarramah. A purposive sample composed of 40 pediatric children with SCD with their mothers was involved in this study according to specific criteria. Different questionnaires were used for data collection.

Result: The most commonly affected age group was of 10–12 years, with boys more involved in the disease. It was found that most of the children always found hard to take a shower, do chores around the house, and do sports. It was also found that children with sickle cell anemia always felt afraid or scared. It was clear that the majority of the children with SCD were always facing problems such as other children did not want to be their friends, having trouble getting along with kids, and other kids tease them. Children always have trouble keeping up with the schoolwork. Overall, all the parameters of QOL are affected in the children with SCD, particularly physical and social well-being.

Conclusion: Most of the subcategories of the QOL, and physical, social, emotional, and school well-being were affected by SCD. There must be adequate measures included in standard treatment guidelines for SCD to improve QOL in children with SCD.

Key words: Sickle cell disease, quality of life, children, physical well-being, emotional well-being

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