The Quality of Life of Sickle Cell Disease Patients in Saudi Arabia 2023

Abstract

The quality of life of sickle cell disease patients in Saudi Arabia 2023. Sickle cell disease (SCD) is a genetic blood disorder that affects millions of people around the world. It is caused by a mutation in the hemoglobin gene that results in the production of abnormal hemoglobin, which is the protein responsible for carrying oxygen in the blood. SCD is relatively common in Saudi Arabia, with a prevalence of around 2.3%, while the carrier state for SCD, sickle cell trait (SCT), is estimated to be 3.1%. The southern region of the country has the highest prevalence of both SCD and SCT, followed by the eastern region, with lower rates in the central and northern regions. The high prevalence of SCD and SCT in Saudi Arabia poses significant challenges to the healthcare system, with individuals experiencing complications such as pain crises, infections, and stroke, leading to increased hospitalizations and costly treatments. The government has taken steps to address this issue through newborn screening programs and comprehensive care provision, but further efforts are required to ensure equitable access to healthcare for all affected individuals. The disease can have a significant impact on the quality of life of patients due to its chronic nature, pain, and complications. In this study, we aimed to comprehensively investigate various aspects of SCD patients' experiences in Saudi Arabia. We explored the experiences of SCD patients, focusing on their encounters with pain, hospitalizations, and interactions with healthcare providers, the impact of SCD on the social lives and relationships of patients and the educational and support needs of both SCD patients and their families By addressing these research objectives, we gain a comprehensive understanding of the challenges and needs of SCD patients in Saudi Arabia, ultimately contributing to the development of more patient-centered and effective care strategies. Data Collection methods, instruments used, measurements: Patients were recruited through treating doctors during routine consultations utilizing an online based comprehensive survey. Result: The recruitment period for this study was from March 1, 2023, to the end of June of the same year. A total of 75 patients participated in the survey. However, only 50 responses were included in the analysis due to missing or conflicting data found in the excluded answers. The median age of the surveyed patients was 28 years, indicating an improvement in the care provided compared to previous published articles. Among the participants, 66.7% were males, and all the responses came from individuals affected by the disease. The majority of the patients (83.3%) resided in the southern region of the kingdom, followed by (16.7%) from the eastern region. Regarding patient support, all included participants stated that their support came solely from their families, as they declined any support from other patients, religious groups, or healthcare professionals. The main sources of support were the parents, followed by life partners and siblings. Although the patients expressed satisfaction with their family support, (50%) were unsure if support from outside the family was necessary. Regarding pain status, 50% of the patients reported experiencing pain more than three times in the last six months. Medical attention was sought in 50% of these cases, and 33.3% of the attacks required admission. In managing their crises, all patients used opioid-based analgesics. However, only (66.7%) used hydration in addition to home remedies, hot compressions, and local treatments, while (16.7%) used non-opioid-based medications. Despite experiencing emotional distress due to the disease symptoms, anxiety, and feelings of being dismissed, none of the patients sought emotional support from certified professional personnel. The disease had a notable impact on the professional lives of the patients, with 50% being unemployed, and others considering quitting their jobs, refusing promotions, or needing job assistance. The treatment goals from the patients' perspective were to reduce disease complications, improve their quality of life, and decrease pain crises and hospital admissions. Unfortunately, less than 49% of the patients achieved these treatment goals with the provided medications.