Decision making for hematopoietic stem cell transplantation in pediatric, adolescent, and young adult patients with a hemoglobinopathy-Shared or not?

Abstract

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. Longitudinal, descriptive study using the Observing-Patient-Involvement-in-Decision-Making scale (OPTION5 ) scale to determine the level of SDM in conversations with 26 hemoglobinopathy patients and/or their caregivers. The total mean OPTION5 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 OPTION5 item was item 3: "informing about the various treatment options" (mean score 2.3 on scale 0-4). For OPTION5 item 4: "eliciting patients' preferences" a more skilled effort was measured for SCD patients compared to thalassemia patients. The mean OPTION5 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.