Assessing Knowledge, Awareness, and Access to Care Barriers for People with Sickle Cell Disease: A Cross-Sectional Global Pilot Study
Abstract
Introduction: Sickle cell disease (SCD) is the most prevalent hemoglobinopathy worldwide that leads to Vaso occlusive pain crises, short- and long-term organ toxicity greatly affecting the quality of life (QOL). A truly global hemoglobinopathy SCD is especially prevalent in sub-Saharan Africa, India, and the middle-east. Due to global population migration sizable SCD populations are found in Europe, the Americas, and Australasia. The objective of this study was to understand global demographic, access to care barrier, knowledge gap and health care utilization trends in patients and caregivers affected by SCD.
Methods: We instituted a comprehensive survey instrument incorporating elements from internationally validated tools WHOQOL (World Health Organization Quality of Life),Sickle Cell Quality of Life Measurement Information System (ASCQ-Me),health-related quality of life (HRQoL) across 11 countries with the highest global SCD prevalence across six continents. These countries included Malawi, Nigeria, Uganda, Zambia, India, United Arab Emirates, Belize, Trinidad, and Tobago, United States, Australia, and the United Kingdom. The survey captured a wide-ranging set of demographic data including age at diagnosis, household income, internet/mobile phone connection, smartphone use, among others and SCD specific questions eg. access to genetic counselling, stroke screening, hydroxyurea use, SCD complications among others. Data was collected February to June 2024 and analysed using…
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