Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2023 Sep;33(5):831-840.
doi: 10.4314/ejhs.v33i5.13.

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

Nada Ahmed Al Sayigh  1 , Marwa Mahmoud Shafey  2 , Amal Ali Alghamdi  2 , Ghada Fouad Alyousif  2 , Fatma Amer Hamza  2 , Zaenb Husain Alsalman  3
Affiliations

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

Nada Ahmed Al Sayigh et al. Ethiop J Health Sci. 2023 Sep.

Abstract

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.

Keywords: Health-related quality of life; SF-36 item; Saudi Arabia; adult; sickle cell disease.

PubMed Disclaimer

Figures

Figure 1
Figure 1
Distribution of Participants according to the number of Painful episodes in the last 6 months
Figure 2
Figure 2
Spydergram for Different Domains of HRQoL-36 among Adults with SCD Abbreviations: Physical Functioning (PF), Role Limitations due to physical health (RP), Role limitation due to emotional problems (RE), Energy/Fatigue(VT), Mental Health (MH), Social Functioning (SF) Pain (BP) and General Health (GH)
See this image and copyright information in PMC

References

    1. Long B, Koyfman A. Sickle Cell Disease and Hereditary Hemolytic Anemias. In: Tintinalli JE, Ma O, Yealy DM, Meckler GD, Stapczynski J, Cline DM, Thomas SH, editors. Tintinalli's Emergency Medicine: A Comprehensive Study Guide. 9e. McGraw Hill; 2020.
    1. Centers for Disease Control and Prevention, author. Sickle Cell Disease. 2019. Retrieved from https://www.cdc.gov/ncbddd/sicklecell/documents/SCD-factsheet_What-is-SCD.
    1. Ahmed AE, Alaskar AS, McClish DK, et al. Saudi SCD patients' symptoms and quality of life relative to the number of ED visits. BMC Emerg Med. 2016;16(1):30. - PMC - PubMed
    1. Kato GJ, Piel FB, Reid CD, et al. Sickle cell disease. Nat Rev Dis Primers. 2018;4:18010. - PubMed
    1. Hand C. Measuring health-related quality of life in adults with chronic conditions in primary care settings, Critical review of concepts and 3 tools. Can Fam Physician. 2016;62(7):e375–e383.

LinkOut - more resources