P126: HEALTH LITERACY AND DISEASE KNOWLEDGE IN YOUNG PERSONS WITH SICKLE CELL DISEASE

Abstract

Background: People living with Sickle Cell Disease (SCD) often suffer excruciating painful episodes, which can be triggered by infection, extreme weather conditions or stress, and lead to frequent hospital admissions (1,2). Having the requisite knowledge about the disease and adequate health literacy may be beneficial for early recognition of symptoms, avoidance of triggers of these painful episodes and overall management of the condition (3). This is a pilot study in preparation for a larger study to examine relationships between health literacy, disease knowledge and health outcomes in young persons with SCD. Aim: This pilot study aimed to test the use of a French version of The Health Literacy Measure for Adolescents (HELMA) questionnaire and a sickle cell disease-specific knowledge questionnaire to assess the health literacy and disease knowledge levels of young people with SCD in a clinical setting in West Africa. Methods: Young patients (aged 15 to 24 years) attending a routine Hematology clinic of The University Hospital (CNHU) in Benin and who could speak French were invited to participate in a questionnaire study. An SCD knowledge questionnaire was developed by administering a survey to 7 medical doctors to gather questions they considered relevant for young patients living with SCD. These responses formed the basis of the questionnaire with 18 questions. Of these, 17 questions were given a score of 1 point while 1 question was given a score of 6 points giving a total of 23 points, with a score greater than 16 indicating high knowledge. The HELMA questionnaire was translated into French. It consists of 44 items transferred to a score from 0 to 100. A score of over 66 is considered an adequate health literacy level. Results: A total of 27 patients were recruited for the study (17 males, 63%). The mean age of the patients was 20 years (range: 15–24 years). Most of the patients in this sample (n=17, 63%) were attending secondary schools, 33% (n=9) were in tertiary institutions while 4% (n=1) had completed primary education. The average time used to complete the SCD questionnaire was 6 minutes (range: 4–8 minutes) while most of the patients completed the health literacy questionnaire after 30 minutes (range: 25–35 minutes). Few patients (n=3; 11%) scored less than 16 points on the SCD knowledge questionnaire indicating a high SCD knowledge in this group, while most of the patients (n=20, 73%) had a score of less than 66 on the HELMA questionnaire indicating inadequate health literacy levels. Summary/Conclusions: This study suggests that it may be challenging to use the HELMA in a clinical setting due to the long duration needed for the administration. A shorter version of the HELMA for use in a clinical setting might be helpful. However, the sickle cell disease-specific questionnaire is suitable to assess patients’ knowledge about their condition in a clinical setting.