Psychosocial and mental profile of children with sickle cell disease and their caregivers

AbstractSickle cell disease (SCD), a chronic debilitating disorder that may negatively affect health-related quality-of-life (HRQoL). In this observational, case–control study, we aim to assess the prevalence of impaired psychosocial profile and poor HRQoL among SCD patients and their caregivers as well as to determine the association of such impairment with parameters of disease severity. Sixty-five children and adolescents with SCD and 65 age- and sex-matched healthy controls and their caregivers were recruited. Demographic and clinical characteristics were collected, and a thorough clinical and psychiatric assessments and HR QoL were conducted. Recruited children and adolescents with SCD were 34 (52.3%) boys and 31 (47.7%) girls, and their mean age was 11.40 ± 3.55. Most of them (n = 44, 67.7%) had sickle HbSβ+, and vaso-occlusive crises were the most common causes for hospital admission (n = 24, 36.9%). Children with SCD and their caregivers had depression and anxiety symptoms scores higher than reported in the control group. Children with SCD had significantly less self-esteem and less QoL scores with the least scores were in the communication domain. This adverse psychological profile was significantly negatively correlated with the age of the child, duration of illness, number and duration of hospitalizations, disease severity score, and occurrence of complications. We conclude that HRQoL of children suffering from SCD, and their caregivers are adversely affected necessitating implementation of interventions which focus on reducing depressive symptoms, enhancing self-esteem and QoL.Keywords: EgyptHRQoLpaediatricSCDpsychosocial Authors’ contributionsFatma S.E. Ebeid, Galila Mohamed Mokhtar, Heba G.A. Ali contributed to the study design, supervised the work from data collection and data analysis, and drafted the first draft of the work. Nermeen Mohamed Elkamel contributed to data collection, while Eman Ahmed Zaky, Reham Ibrahim Abdelmageed revised the psychiatric data. All the authors have reviewed and agreed upon the manuscript content.Statement of ethicsThe study was approved by the Research Ethics Committee, Faculty of Medicine, Ain Shams University (FMASU M S 510/2020) with Assurance No. FWA 00017585 in accordance with the Code of Ethics of the World Medical Association (Declaration of Helsinki) for experiments in humans, 2013. A written signed and dated informed consent was obtained from each caregiver and assent from each subject, if applicable, before inclusion in the study.Disclosure statementThe authors declare no conflict of interest. They do not have a commercial or other association that might pose a conflict of interest (e.g. pharmaceutical stock ownership, consultancy, advisory board membership, relevant patents, or research funding).Data availability statementAll data generated or analyzed during this study are included in this article. Further enquiries can be directed to the corresponding author.Additional informationFundingThe authors do not have any financial support. This research did not receive any specific grant from funding agencies in the public, commercial, or not-for-profit sectors.