Awareness and Acceptance of Hematopoietic Stem Cell Transplantation for Sickle Cell Disease in Jazan Province, Saudi Arabia

Abstract

Background: Sickle cell diseases (SCD) are a group of inherited disorders that lead to abnormal beta subunits of hemoglobin (Hb) and are characterized by several complications which can be life-threatening. The prevalence of this disease is high in Jazan province, Saudi Arabia. The current protocol for the treatment of SCD is mainly based on alleviating signs and symptoms to avoid severe complications. Hematopoietic stem cell transplant (HSCT) is considered a definitive therapy for SCD. However, there is a long patient waiting list for HSCT in Saudi Arabia. A lack of community awareness and incorrect information about the importance of HSCT in SCD treatment is believed to be contributing to the shortage in HSCT. Thus, this study aims to assess community awareness and attitudes toward HSCT as a cure for SCD in Jazan province, Saudi Arabia.Methods: An observational cross-sectional retrospective study was conducted in Jazan province. General and demographic data were collected and pretested survey including questions about public knowledge and attitude toward HSCT for SCD were answered. Both t-test and chi-square tests were used for analysis.Results: 1167 participants were included in this study with a mean age of 26 (SD: 8). About 50% of the study participants believed that SCD can be treated and 78% of the study participants already have heard about HSCT. About 57% of the participants defined HSCT correctly and 42% were willing to donate. Better knowledge and positive attitude toward HSCT were significantly reported among patients with SCD or their relatives as well as among people with higher education and healthcare workers (HCW).Conclusion: About 57% of the study participants were able to define HSCT and most related questions were answered correctly. A positive correlation was found between the knowledge about HSCT and people with higher education or those who were diagnosed with SCD or their relatives and friends. Further, only 42% of our study participants were willing to donate, a percent that is positively associated with better knowledge about HSCT. National education programs are needed to enhance the overall awareness of Jazan communities toward HSCT which could contribute to reducing the number of patients waiting for HSCT.

X-Linked Lymphoproliferative Disease Type 2 With Activation of Hemophagocytic Lymphohistiocytosis Secondary to Epstein-Barr Virus Infection

“…A study conducted in 2015 in India showed that awareness of stem cells in general was 25% in Delhi, and 18% in Bareilly [29]. Another recent study conducted in 2022 in Saudi Arabia showed that approximately 57% have significant knowledge about SCT in relation to sickle cell disease, and 42% were willing to donate [30]. As seen in our case, the mother was reluctant about the decision of SCT, and not having enough awareness about it, which was one of the reasons.…”

“…Int J Clin Pediatr. 2024;13(1): [26][27][28][29][30][31][32][33] Prior to presentation to our hospital, the patient visited another health facility. Parents were advised for bone marrow aspiration and biopsy due to cytopenias, but they refused and wanted a second opinion.…”

Medical Professionals’ Knowledge, Sensitivity, and Attitudes Towards Social and Ethical Aspects of Stem-Cell Donation, Therapy, and Research: Implications for Healthcare Risk Management

“…The study questionnaire was developed by reviewing recent literature, [6][7][8][9][10][11][12][13][14][15][16][17][18] and questionnaires used in previous studies. [12][13][14][15] The first part of the survey collected information about demographic variables.…”

“… 3 Although some fatal diseases, including blood cancers and some immune system diseases, have been treated using stem-cell transplantation, 4 therapy procedures, and outcomes are still evolving. In addition, the lack of adequate knowledge about stem-cell transplantation and therapy outcomes in the various segments of the population 5 has resulted in misperceptions and unrealistic hopes about the contributions and effectiveness of stem-cell therapy for various disease conditions 6 5, 6. Medical professionals involved in stem-cell treatment and research often face ethical dilemmas and social pressures due to several myths associated with these treatments.…”

Knowledge and awareness of sickle cell disease among general population in Tabuk, Saudi Arabia

“…Because of this point mutation, sickle hemoglobin (HbS) is produced, a kind of hemoglobin that is less soluble than typical fetal or adult hemoglobin (Uche et al, 2017). SCD has a worldwide incidence of around 112 cases per 100,000 persons and is one of the most common infectious diseases in the world (Hurissi et al, 2022).…”