Lessons Learned From Talking With Parents About the Role of Hematopoietic Stem Cell Transplantation in the Treatment of Children With Sickle Cell Disease

Abstract

Background: Hematopoietic stem cell transplantation (HSCT) is currently the only cure for sickle cell disease (SCD), but only a fraction of eligible children proceed to transplantation. We aimed to understand parental awareness and perceptions as a contributor. Purpose: To discuss HSCT with parents of children with SCD and assess their awareness and perceptions. Methods: A standardized educational session and pre-post surveys were used. Results: Fifty-seven parents completed the educational session. Parental awareness of HSCT and independent search for information were poor; only 40% of parents were previously aware of HSCT as a treatment option in SCD. However, 91% reported that the information was valuable, and 67% that they would consider HSCT as a treatment option for their child. Parents' main concerns were death, isolation, and infertility. Discussion: Our results support the use of structured educational materials during routine SCD health visits to provide information to parents about HSCT and begin discussing complex treatment options. Translation to Health Education Practice: Our results are relevant to clinicians, health educators, and patient advocates responsible for counseling parents of children with chronic conditions about high-risk curative options. A patient education sheet was generated from this experience and will be used to standardize ongoing parental education at our institutions.

Decision making in pediatric hematopoietic cell transplantation: Influential factors vary among diseases

“…MMAT quality scores of the quantitative, qualitative, and mixed methods studies ranged from 25% to 100%, 25% to 75%, and 25% to 50%, respectively. Across all studies, researchers often investigated the decision retrospectively or in a hypothetical setting . The retrospective setting reflected one's thoughts after a decision was already made, and the hypothetical setting reflected one's interest or thoughts about HCT following an education session or symposium.…”

“…Stakeholders considering HCT for malignancy perceived HCT as the only option, while those considering HCT for nonmalignant diseases perceived options other than HCT . Some stakeholders actually preferred supportive care strategies over HCT for SCD and MPS1 .…”

“…Regardless of the indication for HCT, stakeholders recognized HCT as a cure, with the awareness that HCT offered both hope and danger . Perception of HCT effectiveness was influential to some stakeholders with SCD and FA, but Friedrich et al.…”

“…Perception of HCT effectiveness was influential to some stakeholders with SCD and FA, but Friedrich et al. found concern for treatment failure to be influential in only 7% of parents considering HCT for SCD . Others concentrated on the dangers associated with HCT, such as side effects (i.e., death) and risk to the sibling donor .…”

“…found concern for treatment failure to be influential in only 7% of parents considering HCT for SCD . Others concentrated on the dangers associated with HCT, such as side effects (i.e., death) and risk to the sibling donor . The possibility for a better quality of life was recognized by stakeholders pursuing HCT in those with nonmalignant diseases, but the influence of survival and life itself dominated the decision‐making process in those with malignancy .…”