Factors Associated With Pre-donation Health-related Quality-of-Life Among Pediatric Sibling Hematopoietic Cell Donors: A DonorKids QL Study

Authors

• Galen E. Switzer, University of Pittsburgh, Pittsburgh, PA
• Jessica G. Bruce, University of Pittsburgh, Pittsburgh, PA
• Bronwen E. Shaw, Medical College of Wisconsin, Milwaukee, WI
• Vidya Kuniyil, University of Pittsburgh, Pittsburgh, PA
• James W. Varni, Texas A&M University, College Station, TX
• Brandan J. Butler, Center for International Blood and Marrow Transplant Research, Minneapolis, MN
• Connor Erickson, Center for International Blood and Marrow Transplant Research, Minneapolis, MN
• Alisha Mussetter, Center for International Blood and Marrow Transplant Research, Minneapolis, MN
• Allison Neutzling, Center for International Blood and Marrow Transplant Research, Minneapolis, MN
• Hisham Abdel-Azim, Loma Linda University Children’s Hospital, Loma Linda, CA
• Paibel Aguayo-Hiraldo, University of Southern California, Los Angeles, CA
• Eric J. Anderson, University of California San Diego, San Diego, CA
• Victor M. Aquino, UT Southwestern Medical Center Dallas, Dallas, TX
• Karlie Boone, University of Colorado, Aurora, CO
• Farid Boulad, Memorial Sloan Kettering Cancer Center, New York, NY
• Joseph H. Chewning, University of Alabama at Birmingham, Birmingham, AL
• Jessica Cooper, University of Colorado, Aurora, CO
• Ann Dahlberg, University of Washington, Seattle, WA
• Christopher C. Dvorak, University of California San Francisco, San Francisco, CA
• Jorge Galvez-Silva, Nicklaus Children's Hospital, Miami, FL
• Ann E. Haight, Emory University, Atlanta, GA
• Jennifer A. Hoag, Medical College of Wisconsin, Milwaukee, WI
• Michelle Hudspeth, Medical University of South Carolina, Charleston, SC
• David Jacobsohn, George Washington University School of Medicine and Health Sciences, Washington, DC
• Kimberly A. Kasow, The University of North Carolina, Chapel Hill, NC
• Carrie L. Kitko, Vanderbilt University Medical Center, Nashville, TN
• Lakshmanan Krishnamurti, Yale University, New Haven, CT
• Lisa Madden, University of California Davis, Sacramento, CA
• Lolie C. YuFollow
• et al

Document Type

Article

Publication Date

4-15-2026

Publication Title

Transplantation and Cellular Therapy

Abstract

Due to limited published data assessing pediatric hematopoietic cell donor experiences, we previously conducted one of the largest quantitative investigations of pediatric donor experiences and health-related quality-of-life (HRQoL) at the time (RDSafe). Findings from RDSafe demonstrated that a subset of pediatric HC donors experienced very poor HRQoL; unfortunately, that dataset addressed only a limited number of factors, and key associations explaining this poor HRQoL were not found. In this study, our goal was to address that deficit by describing pre-donation donor HRQoL in detail and identifying factors across five key domains that were associated with donor HRQoL. We conducted a prospective study involving 29 centers in the US (31 enrolled, 29 contributed data). After consent at the local center, data were collected via telephone interviews with donors, recipients, other siblings, and parents, and via a web-based survey from transplant centers. Family data (donors, recipients, sibling, parents) were collected before donation and at four weeks, six months, and one-year post-donation. Domains assessed included sociodemographics, general and donation-related psychosocial, clinical, and transplant center characteristics. Data presented here are from the 133 donor-parent pairs who completed the pre-donation interview, 64 recipients, 59 non-donor/non-recipient siblings in these related donor families, and 78 comparison siblings of patients receiving unrelated marrow, PBSC, or cord blood transplantation. Important percentages of pediatric donors reported very poor psychosocial (20%) and overall (13%) HRQoL and parents overestimated their donor child’s HRQoL. Donors had significantly better HRQoL than recipients and worse HRQoL than parent proxy reports. Multiple donor, recipient, parent and transplant center characteristics were associated with HRQoL in bivariate analyses. Multivariable analyses by donor age group suggested that donor HRQoL was significantly negatively associated with donor self-reported anxiety, depression and parental education and significantly positively associated with family cohesion, understanding of donation and proxy reports of donor HRQoL. The link between donor HRQoL and recipient and parent health and well-being suggests that variations in donor HRQoL do not occur in isolation but affect and/or are affected by the overall functioning and well-being of other family members and the family as a whole. Particularly striking is the association of donor HRQoL with perceived understanding of the donation process—improved donor education is a potential pathway to improving donor HRQoL. Assessment of—and Interventions to mitigate—risks to donors should involve the functioning of the family as a whole and not just the donor.

PubMed ID

41997298

Comments

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Creative Commons License

This work is licensed under a Creative Commons Attribution 4.0 International License.

Recommended Citation

Switzer, Galen E.; Bruce, Jessica G.; Shaw, Bronwen E.; Kuniyil, Vidya; Varni, James W.; Butler, Brandan J.; Erickson, Connor; Mussetter, Alisha; Neutzling, Allison; Abdel-Azim, Hisham; Aguayo-Hiraldo, Paibel; Anderson, Eric J.; Aquino, Victor M.; Boone, Karlie; Boulad, Farid; Chewning, Joseph H.; Cooper, Jessica; Dahlberg, Ann; Dvorak, Christopher C.; Galvez-Silva, Jorge; Haight, Ann E.; Hoag, Jennifer A.; Hudspeth, Michelle; Jacobsohn, David; Kasow, Kimberly A.; Kitko, Carrie L.; Krishnamurti, Lakshmanan; Madden, Lisa; Yu, Lolie C.; and al, et, "Factors Associated With Pre-donation Health-related Quality-of-Life Among Pediatric Sibling Hematopoietic Cell Donors: A DonorKids QL Study" (2026). School of Medicine Faculty Publications. 4723.
https://digitalscholar.lsuhsc.edu/som_facpubs/4723
10.1016/j.jtct.2026.04.012