I know that one day I will be cured, and all will be well: Perspectives on acceptability of curative therapies for sickle cell disease in Tanzania.
Bukini, D.; Kassim, K.; Kanza, C.; Rifai, A.; Chanzi, R.; Amando, A.; Amin, E.; Spector, J.; Makani, J.
Show abstract
While curative treatments for sickle cell disease (SCD) including hematopoietic stem cell transplant and gene therapies are largely restricted to high-resource settings, recent advancements have raised hopes that they will eventually become more accessible to patients in Africa, where the disease is particularly prominent and contributes to substantial morbidity and mortality. Understanding the factors that influence acceptability of curative therapies will therefore be important in developing strategies for successful adoption and implementation. To address this need, a qualitative study was conducted to gain insights into the perspectives of patients and families in Tanzania regarding curative therapies for SCD, focusing on factors affecting treatment acceptability. A total of 81 individuals participated through Focus Group Discussions or In-Depth Interviews. The results indicated substantial interest in current and prospective curative programs, with various factors influencing the attitudes of patients and caregivers differently. Study findings suggested, caregivers decisions were likely to be influenced by the burden of caregiving roles and the financial costs related to care for SCD. Patients were likely to accept the therapies if provided with information on safety of the therapies and requested for transparency of data from treated patients. In preparation for gene therapy trials or transplants, tailored engagement strategies for patients younger than 18 years old will be necessary as majority of SCD patients in Africa are children. Healthcare professionals must be well-informed to address questions and concerns from patients families. Future efforts should incorporate early involvement of patients and caregivers in Africa in programs related to curative therapies for SCD.
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