Donor, Recipient, and Parent Characteristics Associated with Poor Pediatric Sibling Hematopoietic Stem Cell Donor Pre-Donation Health-Related Quality-of-Life; Early Results of the Donorkids QL Study

Document Type

Article

Publication Date

2-2025

Publication Title

Transplantation and Cellular Therapy

Abstract

Although the use of minors as HSC donors is medically and legally accepted there is a lack of understanding of the full range of physical and psychosocial effects of pediatric HSC donation. Our own prior work found that ?20% of pediatric sibling donors experienced very poor health-related quality-of-life (HRQoL) before and following donation ? however, that investigation was not designed to identify key predictors of HRQoL. Between 2019-2024, we conducted a multisite NHLBI-funded R01 in collaboration with CIBMTR and the PTCTC to address this gap in our understanding. DonorKids QL is the largest study of pediatric donors and their families to date and collected telephone interview data from 673 total participants from 29 transplant centers at pre-donation, and 4-weeks, 6-months, and 1-year post-donation. We focus here on a panel of families including donors and their parents (N=133) and recipients (N=64) with complete pre-donation data. The donor sample was aged 5-17 (mean=11.9), 55% female, and 50% White, the recipient sample was aged 5-17 (mean=11.1), 42% female, and 52% White. A significant percentage of donors and recipients had very poor PedsQL psychosocial summary scores (donors=19%; recipients=43%) and total scale scores (donors=12%; recipients=60%) and parents overestimated donor HRQoL by 7%-8% (Figure 1). Donor characteristics associated with poorer pre-donation HRQoL included donor depression (r?=?-.45 to -.78; p< .001) and anxiety (r?=?-.58 to -.69; p< .001), poorer donor-reported family cohesion (r?=?.54; p< .001), ambivalence about donation (r?=?-.37; p=.003), perceived pressure to donate (r?=?-.24; p=.006), and poorer understanding of the donation process (r?=?.30; p< .001). Other family characteristics associated with poorer donor HRQoL included poorer recipient HRQoL (r?=?.43; p< .001), lower parent education level (F?=?4.00; p< .001), parent self-reported depression (r?=?-.20; p=.019) and stress (r?=?-.22; p=.011), and lower family cohesion (r?=?.22; p=.012). Key donor and parent demographic characteristics, including gender, race, income, employment status and partnership status were not associated with donor HRQoL. These findings represent the first comprehensive effort to investigate the full family unit throughout the donation process and provide evidence that donor, recipient, and parent HRQoL and other characteristics are closely interrelated. Our data suggest that interventions to mitigate HRQoL risks during  donation/transplantation should involve the full family unit. Planned longitudinal analyses will allow us to determine which pre-donation donor and family characteristics predict longer-term donor HRQoL.

Volume

31

Issue

2 Suppl

First Page

s95

Comments

Helen DeVos Children's Hospital

Tandem Meetings of ASTCT and CIBMTR, Feb 12-15, 2025, Honolulu, HI

Last Page

s96

DOI

10.1016/j.jtct.2025.01.151

ISSN

2666-6367

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