Pilot Study of Educational Interventions for Pediatric Hematopoietic Stem Cell Sibling Donors to Increase Knowledge of Donation and Transplantation Procedures.

Abstract

Background: Siblings are frequently identified as a tissue match for patients with malignant and nonmalignant diseases and are selected to donate hematopoietic stem cells (HSC). Research on preparing siblings donors for stem cell donation is limited. Even after donation procedures are explained, siblings have been found to have difficulty understanding the information and may experience anxiety, particularly amongst younger donors. No prospective studies examining educational tools and transplant knowledge in sibling stem cell donors are currently available. This pilot study assessed donor comprehension of HSC donation procedures and compared knowledge prior to and post an educational intervention.

Methods: Assessment of baseline knowledge regarding HSC donation was assessed before and after the consent/information meeting with the medical team. Donors were then stratified into 2 groups by age. Donors aged 10 to 15 played an adapted version of the therapeutic game ShopTalk and donors aged 16 to 25 were provided a workbook designed for sibling stem cell donors. Assessment of knowledge was repeated 24 hours after the intervention.

Results: Participants included 17 siblings of pediatric transplant recipients, ages 10-25. Mean knowledge scores increased from 59.6% to 68.8% following the meeting with the medical provider and further increased to 88.5% after an educational intervention. Results suggest that education that provides information via a game or workbook increases knowledge in sibling donors.

Conclusion: Limited interactive educational material on stem cell donation is available for pediatric HSC donors. Additional visual and/or interactive information for sibling donors may increase knowledge and perhaps comfort with the donation process, beyond that which is provided by the medical teams. Providing detailed information about donation and discussion of procedures should be tailored to the individual learning style and supplemented with additional visual information.