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

Abstract

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 (r 2 =0.363, P<0.001) and belief score (r 2 =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.

Determinants of the Ophthalmological Follow-Up of Sickle Cell Patients at the National Center of Research and Care for Sickle Cell Patients in Lome-Togo

“…Secondary and higher levels of education were the most represented, with rates of 46.40% and 44.40% respectively. The predominance of patients with secondary education was also found in the study carried out by Mowatt et al where 61% of patients attended secondary education, while 25% attended higher education [15].…”

Routine Ophthalmological Examination Rates in Adults with Sickle Cell Disease Are Low and Must Be Improved

“…Mowatt et al also administered a questionnaire to patients with SCD; only 28% of subjects answered “Yes” to the question “Do you see your eye doctor for regular checkups?”. Only 42% of respondents answered that they had seen an ophthalmologist once a year, and 21% reported never having seen an ophthalmologist [ 16 ].…”

“…Higher scores were correlated to more regular ophthalmological follow-ups. In addition, the authors found that employment was significantly associated with regular eye examinations in SCD patients, suggesting financial stability may be related to patient compliance with proper ophthalmic care [ 16 ]. A survey by Alsheri et al found that the majority (57.3%) of their SCD patients were not aware of the ocular complications of SCD [ 5 ].…”

The Potential Impact of Mass Media Education in the Psycho-Social Life and Epidemiology of Sickle Cell Disease in Nigeria

“…23% of the population in the pediatric ward had homozygous HbSS and 43.5% have sickle cell gene. The finding from a cohort study in Kenya also revealed that 69.3% of children admitted sickle cell patients were undiagnosed (Lizette, Ayodeji, & Jennifer, 2019).…”