Stem cell transplantation can be a curative treatment for sickle cell disease, but there is some safety risks.
While patients suffering from sickle cell disease often face an unpredictable disease course, stem cell transplants are being considered as a risk but curative treatment option, often leading to families needing to make difficult decisions.
A team, led by Ginny Lynn Schulz, Sinclair School of Nursing, University of Missouri, Columbia, identified the level and source of decisional conflict in families of children and adolescents with sickle cell disease considering a transplant decision.
Decisional conflict can often manifest when family members are making decisions involving risk and uncertain outcomes. This can often lead to patient and family distress, unmet informational needs, and delays in decision making.
In the multiple-case study, the investigators described decisional conflict in various sickle cell severity and donor risk decisional contexts. Each case included a minimum of a child or adolescent with sickle cell disease and at least 1 of their parents.
The investigators captured the decision-making process in real-time by collecting data when the participants met with the transplant physician and ended when their transplant decision was made. The introductory meeting involves a general discussion of the risks and benefits of stem cell transplants, as well as the expectations of the medical team, parents, sibling donor, and patient throughout the transplant process.
The researchers observed the transplant physician discussions and made field notes during the discussions.
The overall goal was to characterize decisional conflict in real-time as participants moved through the standardized process.
The investigators measured the level and source of conflict using the O’Connor’s Decisional Conflict Scale and analyzed this using pattern-matching and cross-case synthesis. In addition, the research team obtained in-depth descriptions of conflict sources through thematic analysis of observation and interview data.
Overall, there were 11 participants from 4 cases of decisional conflict that was not unique not to the decisional context. Conflict levels represented a level that can be linked with feeling unsure, as well as decisional delay.
The investigators found 1 case that met the definition of less severe disease/lower-risk donor, 2 cases of severe disease/lower-risk donor, and 1 case of severe disease/high-risk donor.
Perceptions of sickle cell disease and transplant, awareness of personal values, and assessments of personal support contributed to the decisional conflict, consistent with the researchers propositions and O’Connor’s framework.
However, the fear of death or treatment failure was a consistent worry with transplants, regardless of the donor type. This resulted in a delay in the ultimate decision, as well as feeling unsure about transplant or not proceeding with the transplant.
“We nervous and up all night knowing…So we’ve been pushing that decision off,” a mother in the study said.
Overall, the authors believe the study should drive some decisions as to how doctors should handle these types of situations.
“Varying levels and sources of decisional conflict exist in pediatric patients with SCD and their families considering transplant,” the authors wrote. “In our cases, decisional conflict and the transplant decision occurred at the family-level. Clinicians should encourage all family members to participate in discussions concerning transplant.”
The study, “Navigating decisional conflict as a family when facing the decision of stem cell transplant for a child or adolescent with sickle cell disease,” was published online in Patient Education and Counseling.