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Objectives Transfusion dependent β-thalassaemia can have significant effects on fertility and is also associated with significant risks in pregnancy. However, little is known about the perspectives of women living with the condition with regards to reproductive issues. The aim of this study was to assess the experience, knowledge and information needs of Australian women living with transfusion dependent β-thalassaemia in relation to fertility and pregnancy. Methods A cross sectional study using an online anonymous survey, self-administered through REDCap, addressing key issues related to the experience, knowledge and information needs of women with transfusion dependent β-thalassaemia. Descriptive and inferential analysis was conducted using STATA. Results Sixty participants were included in the analysis. Two-thirds of sexually active, pre-menopausal women were using contraception. Just under half of the participants who were sexually active had children and half had required some form of assisted reproductive technology to achieve a pregnancy. Less than half identified the importance of contraception as part of ensuring optimised pre-pregnancy care, and less than half had accessed pre-pregnancy care. Although there was good understanding of the increased risk of infertility and pregnancy complications, the specific risks and causes of these risks were poorly understood. Around half of the participants indicated they wanted more information on these medical issues. Conclusions for practice Our study demonstrated significant concerns and knowledge gaps in Australian women with transfusion dependent β-thalassaemia with regards to disease-specific issues related to fertility and pregnancy, and a desire for related patient information.
Objectives Transfusion dependent β-thalassaemia can have significant effects on fertility and is also associated with significant risks in pregnancy. However, little is known about the perspectives of women living with the condition with regards to reproductive issues. The aim of this study was to assess the experience, knowledge and information needs of Australian women living with transfusion dependent β-thalassaemia in relation to fertility and pregnancy. Methods A cross sectional study using an online anonymous survey, self-administered through REDCap, addressing key issues related to the experience, knowledge and information needs of women with transfusion dependent β-thalassaemia. Descriptive and inferential analysis was conducted using STATA. Results Sixty participants were included in the analysis. Two-thirds of sexually active, pre-menopausal women were using contraception. Just under half of the participants who were sexually active had children and half had required some form of assisted reproductive technology to achieve a pregnancy. Less than half identified the importance of contraception as part of ensuring optimised pre-pregnancy care, and less than half had accessed pre-pregnancy care. Although there was good understanding of the increased risk of infertility and pregnancy complications, the specific risks and causes of these risks were poorly understood. Around half of the participants indicated they wanted more information on these medical issues. Conclusions for practice Our study demonstrated significant concerns and knowledge gaps in Australian women with transfusion dependent β-thalassaemia with regards to disease-specific issues related to fertility and pregnancy, and a desire for related patient information.
BACKGROUND: Alloantibodies against donor red blood cells (RBCs) are developed by patients with transfusion-dependent thalassemia (TDT), which causes the donor RBCs to hemolyze. This decreases the transfusion’s efficacy and increases the risk of adverse effects like iron overload. MATERIALS AND METHODS: Two hundred and five TDT patients with an average age of 11 ± 6 years enrolled in this study underwent the Direct Coombs Test (DCT) to determine the frequency of alloimmunization. RESULTS: Most cases were of thalassemia major (TM) (76.09%), followed by thalassemia intermedia (TI) and (21.95%). Most of the cases were diagnosed and started on regular blood transfusion therapy between the ages of 1 and 10 years. Majority of the cases were born of parental consanguinity. Only 13.17% of the patients underwent splenectomy, of which TM cases were the majority. Even though O-positive was the most frequent blood type, most of the operated and alloimmunized cases belonged to the B-positive blood type. Only 10.24% of the patients had alloimmunization, with 51.85% of them developing it after splenectomy. Among all study participants, no correlation was found between the blood group and the type of thalassemia, alloimmunization, or splenectomy. Among TDT cases, there was a significant correlation (P < 0.0001) between alloimmunization and splenectomy. Alloimmunization and splenectomy correlated significantly with the total number of transfusions, the volume of blood transfused, and the transfusion initiation age. CONCLUSION: Our findings emphasize the significance of antigen typing in TDT patients before the first transfusion.
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