Background and Objective: Sickle cell disease is a chronic, inherited disease with many complications that worsen the quality of life (QoL) of patients. Although psychosocial problems are common in these patients, they receive the least attention from parents and caregivers. The aim of the present study was to evaluate the psychosocial problems and QoL of children and adolescents with sickle cell disease.
Methods: A cross-sectional study was conducted on 30 patients with sickle cell disease in an Indian tertiary teaching hospital between September 2019 and April 2020. Social and psychological aspects were assessed using the PSC-35 scoring system. To assess the QoL, the current study used a self-designed questionnaire including main psychological, physical, and social domains of the World Health Organization Quality of Life Brief Version (WHOQOL-BREF) scale.
Findings: The mean age of the participants was 8.86 (SD ± 4.54 years) with a range between 2 and 18 years. Among sociodemographic variables, older age, number of hospitalizations, blood transfusions and pain episodes per year were significantly associated with some QoL variables. Although none of the participants in the present study suffered from depression, higher scores on the PSC-35 score were significantly associated with some QoL variables.
Conclusion: Multiple admissions, transfusions, and pain episodes negatively affect the QoL of children and adolescents with sickle cell disease. Because some QoL variables may serve as early predictors of depression, it is recommended to regularly assess the QoL in these children.