Global disparities in knowledge, awareness, and access to care for sickle cell disease: a cross-sectional study of low-middle vs. high income countries
Abstract Objectives The aim of this study is to assess the global knowledge, awareness, and access to care for individuals with sickle cell disease (SCD) focusing on disparities between low-middle and high income countries. Methods A cross-sectional survey with 127 participants was conducted in 11 countries across multiple global regions between February and September in 2024. Data were collected through surveys including questions from various scales such as Short Form Health Survey-36 (SF-36). Data were analyzed through descriptive statistics and chi-square tests, using SPSS (version 29) with a significance level of P < .05. Results Findings show significant differences in early diagnosis, with 81.8% of high income country participants diagnosed at birth, compared to 53.1% in low-middle income countries (P < .001). While 87.3% of all participants understood SCD as a genetic disorder, awareness of stem cell transplantation was higher in high income countries (95.2%) than in low-middle income countries (63.6%) (P = .014). Access to mental health services was also notably higher in high income countries; only 12.1% of participants in low-middle income countries had access to mental health services, compared to 47.4% in high income countries (P = .003). Conclusion The study underscores the urgent need for comprehensive healthcare strategies, including expanded newborn screening, improved financial support, and enhanced mental health services, particularly in low-middle income countries.
Authors
- Safiye Şahin (ORCID: https://orcid.org/0000-0003-1734-9586)
- Lisa R. Roberts (ORCID: https://orcid.org/0000-0003-3722-8634)
- Akshat Jain (ORCID: https://orcid.org/0000-0001-6433-7997)
Institutions
- Loma Linda University (US)
Publication Details
- Journal
- Journal of sickle cell disease.
- Published
- 2025-01-01
- DOI
- https://doi.org/10.1093/jscdis/yoaf023
- Primary Topic
- Hemoglobinopathies and Related Disorders
- Type
- article
- Field-Weighted Citation Impact
- 0.00
Funders
- Loma Linda University