Knowledge, beliefs and practices regarding sickle cell eye disease of patients at the sickle cell unit, Jamaica

Introduction: sickle cell disease can result in visually threatening eye disease (proliferative sickle cell retinopathy). This can be prevented with timely eye screening. It is important for patients to understand their role. Our research is to determine the knowledge, beliefs and practices (KBP) regarding eye disease of Sickle Cell patients and the impact of genotype, demographic and socio-economic status. Methods: cross-sectional study at the Sickle Cell Unit, Jamaica during May 2016. Consecutive non-pregnant adults (>18 years of age) attendees, who were not acutely unwell, were invited to participate. A 26-item single interviewer administered questionnaire was used to obtain socio-demographic data, highest level of education completed, employment status, sickle cell genotype, if known, frequency of clinic attendance and patients' knowledge, beliefs and practices. Ten of these were yes/no questions, whereas eight required that they choose correct answers from four choices. Results: one hundred subjects were recruited, 72% had homozygous SS disease. Their ages ranged from 18-63 years (mean 34.1 years, SD11.3). Fifty six percent were female. Most (75%) had achieved at least secondary education. The majority (62%) were unemployed. The mean belief score was 3.6/6(60%) and the mean knowledge and practice scores were 3.3/7(47%) and 2.2/5(44%) respectively. Milder genotypes had higher knowledge scores vs the more severe genotypes (4.0 vs 3.2, P=0.013). Only 28% had regular eye examinations; less than 50% had seen an ophthalmologist in the past year. Practice scores were higher in employed than in unemployed patients (2.6 vs 1.9, (P=0.04)). Employed patients were more likely than the unemployed to see their eye doctor for regular eye "examinations" (42.1% vs 19.4%, χ2=6.0, P=0.02). The practice and knowledge scores correlated (r2=0.363, P<0.001) and belief score (r2=0.304, P =0.002), except where 98% believed they should see an ophthalmologist annually, but only 42% did, and 21% had never. Conclusion: knowledge scores were fair, however, the practice was not always in keeping with knowledge