Health-Related Quality of Life and Service Barriers among Adults with Sickle Cell Disease in KSA

Abstract

Abstract Background: The burden of sickle cell disease is high in Saudi Arabia with a great impact on patients' quality of life. This study aimed to assess the Health-related quality of life (HRQoL) among adult patients with sickle cell disease. Methods: A cross-sectional study was conducted among adult Sickle cell disease (SCD) patients attending hematologic clinics at Qatif Central Hospital in the Eastern Province of Saudi Arabia. The questionnaire included sociodemographic, SCD characteristics, HRQoL SF-36, and opinion regarding barriers to service provision. Results: Among 272 patients; (64.7%) reported one to three emergency department visits within the last 6 months; 58.5% reported ≥ 20 minutes waiting in the Emergency Room before the examination; 68.4% reported ≥ 15 minutes waiting time before receiving analgesics. Patients who reported ≥ 6 painful episodes during the previous 6 months were 19.1%. The mean percent score for participants’ opinions regarding service provision was 64.2±15.6, and 24.60% had a positive opinion. The highest score of HRQoL was social functioning 65.0±23.4, followed by physical functioning 64.4±24.6. The least score was met in Role limitation due to physical health (47.2±40.4). Different sociodemographic, SCD related characteristics have been related to the impaired HRQoL dimensions. Conclusion: SCD patients exhibited low HRQoL in general and different factors were related to low scores of HRQoL. Counselling, empowerment, and improvement of doctor-patient communication are important strategies to improve health care provision and hence HRQoL.