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

Background: The burden of sickle cell disease (SCD) is high in Saudi Arabia, with a significant impact on patients' quality of life (QoL). This study aimed to assess the health-related quality of life (HRQoL) among adults with SCD. Methods: A cross-sectional study was conducted among adults with SCD attending hematology clinics at Qatif Central Hospital in the Eastern Province of Saudi Arabia. The questionnaire included subsections to collect information from participants, including sociodemographic attributes, SCD characteristics, HRQoL based on SF-36, and opinions regarding barriers to service. Results: Among 272 SCD patients, the highest mean score of HRQoL was observed in the social functioning (SF) domain (65.0±23.4), whereas the lowest score was observed in the role limitations due to physical health (RP) domain (47.2±40.4). The mean score for participants' opinions regarding service provision was 19.27±4.68 (min-max:10-30), and only 24.6% had a positive opinion regarding the accessibility of service provision. A total of 38.6% of the respondents acknowledged shortcomings in the services offered by healthcare staff, and 43% identified weaknesses in communication with healthcare staff. Moreover, 40.1% agreed about feeling stigmatized about their condition. SCD patients who were <40 years old, males, had a university degree, had health insurance, waited <15 minutes before receiving health care, and had positive opinions regarding service provision were more likely to have better HRQoL scores. Conclusion: Adults with SCD exhibited low HRQoL in general, and different factors were related to low HRQoL scores. Counselling, empowerment, and improvement of doctor-patient communication are important strategies to improve healthcare provision, and consequently, HRQoL among adults with SCD.