Faculty Collaboration Database

Factors Associated With Pre-donation Health-related Quality-of-Life Among Pediatric Sibling Hematopoietic Cell Donors: A DonorKids QL Study. Transplant Cell Ther 2026 Jul;32(7):885.e1-885.e14

Date

04/18/2026

Pubmed ID

41997298

Pubmed Central ID

PMC13479314

DOI

10.1016/j.jtct.2026.04.012

Scopus ID

2-s2.0-105038259426 (requires institutional sign-in at Scopus site)

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.

Author List

Switzer GE, Bruce JG, Shaw BE, Kuniyil V, Varni JW, Butler BJ, Erickson C, Mussetter A, Neutzling A, Abdel-Azim H, Aguayo-Hiraldo P, Anderson EJ, Aquino VM, Boone K, Boulad F, Chewning JH, Cooper J, Dahlberg A, Dvorak CC, Galvez-Silva J, Haight AE, Hoag JA, Hudspeth M, Jacobsohn D, Kasow KA, Kitko CL, Krishnamurti L, Madden L, Miller HK, Morales E, Olson TS, Pawlowska AB, Prasad VK, Quigg TC, Scaradavou A, Shah NC, Shenoy S, Terwilliger NB, Wiener L, Yanik GA, Yu LC, Pulsipher MA

Authors

Jennifer A. Hoag PhD Professor in the Pediatrics department at Medical College of Wisconsin
Bronwen E. Shaw PhD, MD Center Director, Professor in the Medicine department at Medical College of Wisconsin

MESH terms used to index this publication - Major topics in bold

Adolescent
Adult
Child
Child, Preschool
Female
Hematopoietic Stem Cell Transplantation
Humans
Male
Prospective Studies
Quality of Life
Siblings
Surveys and Questionnaires
Tissue Donors