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

Background:

• Hematopoietic Stem Cell Transplant (HSCT) represents the second most frequent major organ transplant in the United States.
• A variety of psychological difficulties in sibling donors post-stem cell donation are reported, including withdrawal, guilt, anger, depression, anxiety, mild to severe psychopathology, and post-traumatic stress symptomatology.
• The importance of preparation for children undergoing medical procedures has long been recognized in the field of pediatric psychology. In previous research, siblings who felt they were not adequately prepared for possible complications following HSCT donation and transplant often described negative emotions.
• Some siblings have reported feeling pressured and coerced to become a donor, while others describe a lack of attention to their physical fears associated with donation and their psychological concerns.
• No prospective studies examining educational tools and transplant knowledge in sibling stem cell donors are currently available.

Objectives:

• To assess pediatric 1st degree stem cell donor comprehension of transplant procedures and compare knowledge prior to educational interventions (pre and post-consent informational session) to knowledge following educational interventions.
• To assess the effectiveness of a workbook intervention as a learning tool for conveying information on stem cell donation and transplantation to pediatric donors.
• To assess the effectiveness of a board game intervention (ShopTalk) as a learning tool for conveying information on stem cell donation and transplantation to pediatric donors.
• To identify donors who may require additional preparation prior to stem cell collection.
• To measure donor anxiety pre and post the educational intervention and stem cell donation and explore the relationship between donor knowledge and anxiety symptoms.

Eligibility:

• Age: 10 to 26 years of age
• Participants or their parents must consent to participation in active bone marrow and peripheral blood stem cell transplant protocols at the NIH.
• For donors less than 18 years of age, their legal guardian must give informed consent, the donor must give written assent.
• For donors greater than or equal to 18 years of age, ability to give informed consent.
• Participants must understand and read English or Spanish.

Design:

• Baseline knowledge will be assessed following consent.
• Knowledge will be reassessed following the information session for the transplant protocol
• Donors will be stratified into 2 groups by age. Donors ages 10 to 15 will be scheduled the following day to play a game called ShopTalk. Donors ages 16 to 26 will be given a workbook on HSCT specifically designed for 1st degree stem cell donors. Knowledge will be reassessed following the administration of these interventions.
• A follow-up assessment will be administered to all participants 1 month after the post intervention test was administered.

• INCLUSION CRITERIA:
• Age: 10 to 26 years of age.
• Participants or their parents must consent to participation in active bone marrow and peripheral blood stem cell transplant protocols at the NIH.
• For donors less than 18 years of age, their legal guardian must give informed consent, the donor must give written assent.
• For donors greater than or equal to 18 years of age, ability to give informed consent.
• Participants must understand and read English or Spanish.

Exclusion criteria

• Presence of psychiatric or psychological symptoms which in the judgment of the Principal or Associate Investigators would compromise the donor's ability to engage in the intervention or is likely to interfere with the study procedures or results.
• Preciously identified cognitive impairment, which in the judgment of the Principal or Associate Investigators would compromise the donor's ability to understand the educational materials or the board game rules and procedures, and is likely to interfere with the study procedures or results.