Prenatal diagnosis in Islamic countries: A narrative review in 2013

ARTICLE INFO ABSTRACT Article type: Review Article To review the current situation regarding prenatal diagnosis in Islamic countries, a descriptive study (narrative review) has been done based on the available data in formal international and national published documents in 2013. The sources were papers, websites and electronic books. Time limitation of searches has started 20 years ago. The main languages were English and Persian. Forty seven nations were officially referred as Islamic since more than 50% of the citizens are Muslims. The holy Qur'an and Islamic traditions (Shari'aht) are the core of the civil laws, however, the legal grounds for prenatal diagnosis differ in Islamic countries. The main ground is the endangerment of a mother's life, however, severe suffering of parents (Osr va Haraj) is also considered in the Islamic Republic of Iran. Some other important issues such as pregnancies as a result of rape should be discussed more in some Islamic countries. Many "hard to treat diseases" such as chromosomal disorders, major hemoglobinopathies, inborn error of metabolism, Duchene muscular dystrophy, spinal muscular dystrophy are being diagnosed early in embryonic period that medical abortion is advisable. Prenatal diagnosis is an acceptable practice in both religious and secular governments in the so-called Islamic countries

Demographic data of patients with β-thalassemia major recorded in the electronic system in the north of Iran, 2016

Background: Major thalassemia prevention project in Iran began in 1997. Mazandaran Province in northern Iran took effective steps in preventing the birth of patients with thalassemia major in the country. We report on the demographic status of patients with thalassemia major registered in the electronic system of Mazandaran Province in Iran.Methods: The web-based application of the Mazandaran Thalassemia Registry (THRegistry) was designed based on the Net Framework platform in VB.Net and the 2014Sql Server database. The information source included clinical records in 14 thalassemic wards of the Mazandaran province hospitals. Epidemiological data of patients and date of transfusion, blood group, educational status, employment, marital status and having children were recorded.Results: The study population was 1,725 patients including 889 (51.5%) women and 836 (48.5%) men with a mean age of 30±9.6 years. A total of 188 patients born have been identified after the launch of the country's disease prevention plan in 1997. Prenatal diagnosis (PND) services were not used in 99 cases, PND result was mistaken in 6 other cases and in the remaining 5 cases PND was performed. A total of 1,314 patients (76.2%) were blood transfusion dependent thalassemia (TDT). Mean haemoglobin level in male and female patients was 9.4±6.3 and 9.01±5.1/100 g/dl, respectively. The mean age of onset of transfusion was 4±6.3 years. A total of 382 cases (22.1%) of married patients had a child of their own.Conclusions: The system is a good resource to design descriptive and cohort studies, survival studies, therapeutic planning, and observation of the success of the major thalassemia prevention project

The Effect of E-Learning on Lifestyle in Adolescents with Thalassemia Major

AbstractIntroduction: One of the ways to improve the quality of life of patients with thalassemia major is to empower patients through education to deal with the effects and complications of illness and control disease and life further. This study aimed to determine the impact of E-learning intervention on self-care behaviors in patients with thalassemia major.Methods: The present study is a quasi-experimental study of clinical trial type. The effect of e-learning on the lifestyle of eligible adolescents with thalassemia major of both sexes referred to Razi, and Bu Ali Sina Hospitals was investigated. Samples were divided into two groups control (N=25) and intervention (N=25). The control group received routine training from the relevant centers or health care staff, and the intervention group received e-learning and regular exercise. Data were collected through valid and reliable questionnaires, including two main parts. The first part contains demographic information. The second part of the questionnaire was a standard health-promoting behaviors questionnaire that assesses the lifestyle of adolescents in three dimensions nutrition, physical activity, and stress management. Finally, data were analyzed using SPSS version 22, and P-value less than 0/05 was considered significant.Results: Obtained results demonstrated a significant difference in the quality of nutrition in adolescents with thalassemia before e-learning intervention between intervention and control groups (P< 0.05). Moreover, after the intervention, there was a significant difference in the stress management of the intervention and control groups, and the scores of the intervention group increased significantly (P< 0.05). The findings also indicated that physical health was also considerably increased in adolescents with thalassemia after intervention by e-learning compared to the control group (P< 0.05).Conclusions: It can be concluded that e-learning has a significant effect on patients' quality of life with thalassemia in three dimensions: nutrition, physical and mental health. The results of this study can serve as a guideline for designing appropriate educational programs for thalassemia patients. &nbsp

Letter to Editor

No Abstrac

Decrease of Hepatitis C Burden in Patients With Transfusion Dependent Beta Thalassemia Major, Thalassemia Research Center, 1995 – 2014

Background: Chronic hepatitis C infection used to be one of the most important burdens on patients with transfusion-dependent beta thalassemia major (TDTM). Chronic active hepatitis reduces quality of life, and liver cirrhosis and cancer shorten life expectancy in many cases. Objectives: We compared the characteristics of our patients at the Thalassemia Research Center (TRC) regarding hepatitis C infection at two time points. Patients and Methods: A review was conducted in a cohort of 390 TDTM patients with a history of at least one blood transfusion in 2014. Type of treatment protocol for hepatitis C virus (HCV) and the number of courses were defined. Descriptive statistics were performed using SPSS software (V16). Results: Screening for HCV started in 1995 at the TRC. Seventy-seven (15%) patients were antibody-positive in 1995. Tests for virus detection were not available at the time. Patients have been examined using serum AST, ALT, bilirubin, PT, PTT, and liver biopsy, and 45 were treated using alpha interferon alone. A second liver biopsy was performed at the end of treatment for 21 patients, and a blinded pathologist compared the histology according to the Knodell score. According to normalization of liver enzymes, the treatment was successful (McNemar test, P < 0.02). Based on the Knodell score, 54%, 31%, and 11% had complete, partial, and no response, respectively. A quantitative test for viremia became available thereafter. Thirteen patients who were resistant to alpha interferon have been treated using “Pegasys”™ ± ribavirin. Ten patients responded; however, three have been resistant and are still viremic. Twenty-seven patients received no treatment. Twenty-two (81.4%) had negative PCR tests. Five viremic patients refused treatment. A second screening test for HCV antibody was introduced in 2001, and, since then, annual screening for HCV antibody has been performed for all patients. No new case has been found since 2001. During the follow-up period, two deaths have been recorded in the cohort; none was a direct consequence of liver disease. Both patients had negative PCR tests for viremia. In 2014, there were 72 patients (52% men) with positive antibody tests, with a mean age of 30.5 ± 5.7 years. They mean age at the first blood transfusion was 2.8 ± 2.5 years. At the time of publishing, 15 patients (3.8%; 95% confidence interval 2 - 5.6) had viremia. Five patients had documented liver cirrhosis. Conclusions: The prevalence of hepatitis C virus has decreased dramatically owing to primary prevention (donor blood screening and discarding infected blood) and antiviral treatment of affected patients. Better clinical management with iron chelating agents and supportive therapy for cirrhotic patients is also in place

Prenatal diagnosis in Islamic countries: A narrative review in 2013

To review the current situation regarding prenatal diagnosis in Islamic countries, a descriptive study (narrative review) has been done based on the available data in formal international and national published documents in 2013. The sources were papers, websites and electronic books. Time limitation of searches has started 20 years ago. The main languages were English and Persian. Forty seven nations were officially referred as Islamic since more than 50% of the citizens are Muslims. The holy Qur'an and Islamic traditions (Shari'aht) are the core of the civil laws, however, the legal grounds for prenatal diagnosis differ in Islamic countries. The main ground is the endangerment of a mother's life, however, severe suffering of parents (Osr va Haraj) is also considered in the Islamic Republic of Iran. Some other important issues such as pregnancies as a result of rape should be discussed more in some Islamic countries. Many “hard to treat diseases” such as chromosomal disorders, major hemoglobinopathies, inborn error of metabolism, Duchene muscular dystrophy, spinal muscular dystrophy are being diagnosed early in embryonic period that medical abortion is advisable. Prenatal diagnosis is an acceptable practice in both religious and secular governments in the so-called Islamic countrie

Prenatal diagnosis in Islamic countries: A narrative review in 2013

Objective: To review the current situation regarding prenatal diagnosis (PND) in Islamic countries. Methods: A descriptive study (narrative review) has been done based on the available data in formal international and national published documents in 2013. The sources were papers, websites and electronic books. Time limitation of searches has started 20 years ago. The main languages were English and Persian. Results: Frothy seven nations were officially referred as Islamic since more than 50% of the citizens are Muslims. The holy Qur'an and Islamic traditions (Shari'aht) are the core of the civil laws, however, the legal grounds for prenatal diagnosis differ in Islamic countries. The main ground is the endangerment of a mother's life, however, severe suffering of parents (Osr va Haraj) is also considered in the Islamic Republic of Iran. Some other important issues such as pregnancies as a result of rape should be discussed more in some Islamic countries. Many “hard to treat diseases” such as chromosomal disorders, major hemoglobinopathies, inborn error of metabolism, Duchene muscular dystrophy, spinal muscular dystrophy are being diagnosed early in embryonic period that medical abortion is advisable. Conclusion: Prenatal diagnosis is an acceptable practice in both religious and secular governments in the so-called Islamic countries