Background: Hematopoietic stem cell transplantation (HSCT) offers an established curative option for sickle cell disease (SCD) and thalassemia patients but is associated with significant risks. Decision making is a complex process and shared decision making (SDM) could be a fitting approach in case of such preference-sensitive decisions. This study investigated what level of SDM is used in conversations with hemoglobinopathy patients and/or their caregivers considering HSCT as a curative treatment option.Methods: Longitudinal, descriptive study using the Observing-Patient-Involvementin-Decision-Making scale (OPTION 5 ) scale to determine the level of SDM in conversations with 26 hemoglobinopathy patients and/or their caregivers. Results:The total mean OPTION 5 score was 43%, which is a moderate SDM approach.There was no difference between conversations with thalassemia patients and SCD patients. Conversations needing an interpreter scored worse than nontranslated conversations. The best scoring OPTION 5 item was item 3: "informing about the various treatment options" (mean score 2.3 on scale 0-4). For OPTION 5 item 4: "eliciting patients' preferences" a more skilled effort was measured for SCD patients compared to thalassemia patients. Conclusions:The mean OPTION 5 score of "moderate" was achieved mainly by giving information on available options, which is primarily a one-way communication. The SDM process can be improved by actively inviting patients to deliberate about options and including their elicited preferences in decision making.
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