Haemoglobinopathy Awareness among Young Students in Turkey: Outcomes of a City-Wide Survey.

The success of prevention programs demonstrated the importance of raising awareness about haemoglobinopathies since the lack of knowledge and awareness about the disorders may serve as barriers to prevention, disclosure of disease status as well as to testing for haemoglobinopathies. The aim of this study is to investigate the knowledge and attitudes of middle and high school students towards haemoglobinopathies in Hatay, where the disorders are prevalent. This cross-sectional study was conducted on 8th and 9th grade students across Hatay including all sub provinces. From May 2012 to December 2012, a total of 1925 students filled the questionnaires which query the knowledge level and attitudes of students by face to face method. Among questions regarding students' knowledge about haemoglobinopathies, the lowest correct response rate was observed in "How do these diseases transmit?" with 31.8%, meaning most of the students did not know that the diseases are transmitted by heredity. Significant differences were observed between the correct answer rates of the students and their status of being previously informed. Students who had a diseased person around were having a 2.597-fold (95%CI = 1.886-3.575); students possessing at least one parent at secondary education level or above were having a 1.954-fold higher probability of being previously informed (95%CI = 1.564-2.443). Due to the lack of knowledge about haemoglobinopathies in middle and high school students, we suggest health education programs including informative lectures particularly about the genetic basis of the disorders especially in the regions where the disorders are prevalent.

Evaluation of married haemoglobinopathic carrier couples for prevention of haemoglobinopathic births.

BACKGROUND: Abnormal haemoglobins (Hb) and thalassaemias are some of the most frequently observed hereditary disorders in the world, but especially in the Mediterranean region where Turkey is located. Hatay province is one of the largest provinces in the region, suggested as a target area to be selected for preventive programs after studies by three Turkish universities, i.e. Çukurova, Akdeniz and Hacettepe Universities in Turkey. AIMS: The aim of this study was to determine demographic and family characteristics of all haemoglobinopathy carrier married couples registered in the Hatay Provincial Health Directorate registry and to educate the target population about pregnancy, births, prenatal diagnosis and genetic counselling with the particularly emphasised scope of eliminating all haemoglobinopathic births. STUDY DESIGN: Descriptive cross-sectional and intervention study. METHODS: 1065 couples both being haemoglobinopathic carriers, registered in the Hatay Provincial Health Directorate registry were investigated for socio-demographic characteristics, obstetrical status and especially for a present pregnancy, the presence of any haemoglobinopathic patients or carrier children in the family. RESULTS: Among women with a history of pregnancy, 47.3% reported that they had never had any prenatal testing, while 33.1% had got received testing in each of their pregnancies. The most frequent reason for not having the test was declared as unawareness of the test (66.0%), followed by economic insufficiencies (17.1%), destiny/religious reasons (9.1%) and family interference (7.8%). After a series of descriptive analyses, the results of the final binary logistic regression model constructed to find out the risk factors significantly affecting the presence of a sick child in the family were grouped as risk increasing factors like age (95%CI between 1.002 and 1.122), marriage before 1994 (95%CI=1.081-4.161), and risk decreasing factors like family willingness for screening (95%CI=0.167-0.854), rate of prenatal testing (95%CI=0.147-0.414), age at first pregnancy (95%CI=0.469-0.882); while the frequency of births was found to have no significant effect (p>0.05). CONCLUSION: Besides all legal regulations and applications, time is still needed for real success against such a diffuse and congenitally transferred disease. The education of the target populations appears to be crucial. Official applications should be forced based upon present or future laws.