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Showing 3 results for Thalassemia
Designing and Creating Personal Electronic Health Records for Thalassemia Major Patients
Khadije Moeil Tabaghdehi , Marjan Ghazisaeedi , Leila Shahmoradi , Hossein Karami,
Volume 11, Issue 5 (1-2018)
Abstract
Background and Aim: Thalassemia is a chronic disease which is extremely expensive, complex and debilitating. The management skill of thalassemia patients should be enhanced to minimize the risk of disease complications. The main purpose of this study was to develop personal electronic health records for thalassemia major patients.                                             
Materials and Methods: This is a developmental applied study which was conducted to develop a personal electronic health record for thalassemia major. First, a questionnaire was prepared to determine the data elements and was filled by Hematology and Oncology professionals in the country (110 persons). Then, based on the results of needs analysis, the system was designed using PHP programming language and MySQL database and was evaluated by 50 thalassemia patients who referred to the Thalassemia Clinic of Bu Ali Sina Hospital of Mazandaran University of Medical of Sciences during the second half of the month of Aban. Finally, a standard questionnaire of usability and user satisfaction assessment was distributed among them.   
Results: Usability evaluation of the system showed that patients evaluated the system at a good level with a mean rating of 7.91 (out of 9 points). 
Conclusion: The web-based systems can be used to help thalassemia patients to control injection and reduce the complications of the disease and to promote health. 

Comparison of Duffy Blood Group System Genotype in Kurdish Patients with Beta-Thalassemia Major in Kermanshah City: A Case-Control Study
Ali Maleki, Marivan Noori, Rezvan Zomorodi, Fakhredin Saba,
Volume 16, Issue 5 (12-2022)
Abstract
Background and Ami: Identifying the genotype of blood groups in different communities will give the decision makers of the health system to take the necessary measures to prevent and identify the possible side effects of blood transfusion, including the production of alloantibodies. Duffy blood group has increased the possibility of alloantibody production in beta-thalassemia major patients who regularly need blood transfusion due to different types of genotype with different prevalence. However, no study has been conducted regarding the frequency of Duffy blood group distribution in beta-thalassemia Kurd patients dependent on blood transfusion.
Materials and Methods: This case-control study was conducted on 100 patients with beta thalassemia major, as case group and 50 healthy individuals, as control group, in Bostan Clinic, Kermanshah University of Medical Sciences. After collecting peripheral blood samples from people participating in the study, DNA was extracted from peripheral blood mononuclear cells. Then, using PCR-RFLP and electrophoresis, Duffy genotypes including FYA/A, FYB/B and FYA/B were identified.
Results: The results of Chi-square test showed that in the patient group, there is no statistically significant difference between the two genders in terms of the frequency of distribution of Duffy genotypes (P=0.588). On the other hand, in the healthy group too, there was no statistically significant difference between the two sexes in terms of the frequency of distribution of Duffy genotypes (P=0.707). According to nominal regression results, although the distribution ratio rate (95% confidence interval) of FYA/FYA and FYB/FYB genotypes as compared to FYA/FYB genotype (reference category) in the patient group as compared to healthy people was 2.42 (0.7 to 8.34) and 0.76 (0.36 to 1.64) respectively, but there was no statistically significant difference between the case and control groups in terms of the distribution frequency of these genotypes (P<0.05).
Conclusion: The frequency distribution of Duffy genotypes in beta-thalassemia major patients is similar to that of healthy people, and there is no relationship between the distribution of Duffy genotypes and beta-thalassemia disease. FYB genotype has the highest frequency in both case and control groups

The Effect of Family-Centered Empowerment Model Based on Multimedia Education on the Quality of Life of Children Aged 8-12 Years with Beta Thalassemia
Akram Hemmatipour, Ali Hatami, Azam Jahangirimehr, Foruzan Jelodari, Zahra Mehri,
Volume 17, Issue 1 (3-2023)
Abstract
Background and Aim: There is a correlation between disease and quality of life in patients with chronic disease and physical disorders have a direct effect on all aspects of quality of life. Therefore, this study was conducted to determine the effect of family-centered empowerment model based on multimedia education on the quality of life of children with thalassemia.
Materials and Methods: In this experimental study, 120 patients along with their parents, who had medical records at the thalassemia center of Khatam al-Anbiya Hospital in Shoushtar, were selected according to the inclusion criteria and were divided into two groups of intervention and control (n=60) by random allocation. Subjects were matched in terms of age and gender. The data collection tools included Pediatric Quality of Life Inventory (Ped-SQL) and researcher-made questionnaires of awareness and self-efficacy in the area of thalassemia. The collected data were analyzed using SPSS and Mann-Whitney and Wilcoxon statistical tests and Pearson’s correlation coefficient.
Results: Out of 120 children who were included in the study, 87 were girls (72.5%), the mean age of these children was 9.74±2.25 years and disease duration was 5.35±4.47 years. In this study, in terms of children’s quality of life and its dimensions, after the implementation of the educational model, a significant increase was observed compared to pre-test phase only in the intervention group (P<0.001). After implementing this model, the level of knowledge (P<0.001) and self-efficacy of parents (P=0.003) was faced with a significant increase, and this significance was also observed compared to the control group (P<0.001). The variables of age, gender, disease duration and parents’ education level had no effect on parents’ self-efficacy and knowledge as well as children’s quality of life (P>0.05).
Conclusion: Based on the results of the present study, the implementation of family-centered empowerment programs based on multimedia education among parents of children with thalassemia improved the quality of life of these children by increasing the knowledge and self-efficacy of their parents. It is suggested that this program be implemented on a wider scale with better facilities for parents and the family members.

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