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

Abstract

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.

How to Facilitate Decision-Making for Hematopoietic Stem Cell Transplantation in Patients With Hemoglobinopathies. The Perspectives of Healthcare Professionals

“…Research evaluating the SDM approach in conversations showed low or moderate levels of patientinvolving behavior. (40,41) These results shows the need for the implementation of SDM interventions and SDM training for HCP. In treatment decision-making, an advocating role of the HCP is necessary in which both the patient's health and respect for the patient's self-determination need to be thoughtfully balanced (39).…”

Survivorship Experiences of Chinese Hematopoietic Stem Cell Transplantation Survivors: A Qualitative Study

“…38 HSCT decision regret may relate to insu cient information about HSCT side effects provided to patients before transplantation. As the HSCT treatment decision is a "preferencesensitive" decision, 39 shared decision-making is suggested. "Limited activity space" is a subtheme that highlights a shrunken social world for HSCT survivors.…”

Shared decision-making between paediatric haematologists, children with sickle cell disease and their parents: an exploratory study

“…This was also observed in previous studies in other areas of medicine [ 28 ] . In our study, this may be due to a (possibly unconscious) treatment preference among paediatricians, which may have led to discussing only one option, and thereby nudging the parent/patient to choose this option [ 29 , 30 ]. Audio-recordings indicated a discrepancy between consistently applying SDM compared to advising what was considered by paediatricians as the best available treatment option.…”