Background: Thalassemia remains a public health problem in Tunisia. The difficulties in setting up a prevention program can be explained in part by negative social representations and the general public’s ignorance of this disease.
Aims: This study examined the health literacy (HL) of Tunisian secondary school students regarding thalassemia as well as their emotional and behavioral attitudes towards this disease and preventive measures.
Methods: This is a quantitative study; a cross-sectional survey was conducted among Tunisian youths (n = 182; male 23,3 %, female 76,7 %). Data collection took place in two public secondary schools. Students aged 17 to 19 completed a paper and pencil questionnaire and described their knowledge level about Thalassemia, their affective and behavioral attitudes as well as their estimates of hereditary transmission risks and usefulness of prevention measures. Statistical software (SPSS, v.25.0) was used to analyze the data.
Results: The results indicate low HL scores concerning Thalassemia. Lack of knowledge and confusion about the cause, symptoms, and diagnosis of Thalassemia is a common finding at all school levels surveyed.
48,9 % has not identified the hereditary nature of diseases and confuse it with dietary iron anemia 30,7%.
Although 70,5% of respondents recognized severe anemia as a symptom however, 57,4% did not link jaundice to thalassemia, almost 30% said this disease causes rash, fever, dry cough and sore throat.
The results show low levels in relation with assessment of the hereditary transmission risks on the one hand and the prenuptial screening usefulness on the other hand. 24,4% do not consider it necessary to inform their partner of their carrier status. 45% do not see the benefit of genetic counseling before marriage and prenatal diagnosis even if the family of one of the two partners has a history with disease.
Summary/Conclusion: Primary prevention of thalassemia depends on a comprehensive strategy of promotion and health education for Tunisian’s youth. This survey reveals the difficulties of youths to consider the risks of hereditary transmission of thalassemia and to understand the importance of screening and genetic counseling. These results can be explained by the deficit of communication about disease severity and the lack of adequate educational content in Life Sciences programs.