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Health-Related Quality of Life among Pediatric Hematopoietic Stem Cell Donors. J Pediatr 2016 Nov;178:164-170.e1 PMID: 27522440 PMCID: PMC5085860

Pubmed ID

27522440

DOI

10.1016/j.jpeds.2016.07.009

Abstract

OBJECTIVES: To examine health-related quality of life (HRQoL) among sibling pediatric hematopoietic stem cell donors from predonation through 1 year postdonation, to compare donor-reported HRQoL scores with proxy-reports by parents/guardians and those of healthy norms, and to identify predonation factors (including donor age) potentially associated with postdonation HRQoL, to better understand the physical and psychosocial effects of pediatric hematopoietic stem cell donation.

STUDY DESIGN: A random sample of 105 pediatric donors from US centers and a parent/guardian were interviewed by telephone predonation and 4 weeks and 1 year postdonation. The interview included sociodemographic, psychosocial, and HRQoL items. A sample of healthy controls matched to donors by age, gender, and race/ethnicity was generated.

RESULTS: Key findings included (1) approximately 20% of donors at each time point had very poor HRQoL; (2) child self-reported HRQoL was significantly lower than parent proxy-reported HRQoL at all 3 time points and significantly lower than that of norms at predonation and 4 weeks postdonation; and (3) younger children were at particular risk of poor HRQoL.

CONCLUSIONS: Additional research to identify the specific sources of poorer HRQoL among at-risk donors (eg, the donation experience vs having a chronically ill sibling) and the reasons that parents may be overestimating HRQoL in their donor children is critical and should lead to interventions and policy changes that ensure positive experiences for these minor donors.

Author List

Switzer GE, Bruce J, Kiefer DM, Kobusingye H, Drexler R, Besser RM, Confer DL, Horowitz MM, King RJ, Shaw BE, van Walraven SM, Wiener L, Packman W, Varni JW, Pulsipher MA

Authors

Mary M. Horowitz MD, MS Center Director, Professor in the Medicine department at Medical College of Wisconsin
Bronwen E. Shaw MBChB, PhD Professor in the Medicine department at Medical College of Wisconsin




Scopus

2-s2.0-84994322338   7 Citations

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

Adolescent
Child
Child, Preschool
Female
Hematopoietic Stem Cell Transplantation
Humans
Male
Parents
Proxy
Quality of Life
Siblings
Surveys and Questionnaires
Tissue Donors
United States
jenkins-FCD Prod-331 a335b1a6d1e9c32173c9534e6f6ff51494143916