Factors Associated with Opting Out of Donation among Registered Young Unrelated Hematopoietic Stem Cell Donors

Hamed, Ahmed B.; Bruce, Jessica G.; Kuniyil, Vidya; Mattila, Deborah; Williams, Eric; Dew, Mary Amanda; Myaskovsky, Larissa; Confer, Dennis L.; Switzer, Galen E.

doi:10.1016/j.jtct.2022.11.026

Cited by 6 publications

(3 citation statements)

References 29 publications

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“…Another finding of our study is that, when available, the Donor Readiness Score revealed markedly lower scores for donors requested for non-European ancestry patients. Registries must address the high donor attrition and work to improve Donor Readiness scores and URD availability especially for US domestic donors, younger donors, 18 and those of non-European ancestry, 19 , 20 , 21 , 22 given their higher attrition rates and lower availability. These interventions include regular engagement with listed URDs to renew their commitment and reassess eligibility.…”

Section: Discussionmentioning

confidence: 99%

Racial/ethnic disparities in availability of volunteer unrelated donors for allogeneic transplantation

Fingrut,

Davis,

Archer

et al. 2024

Blood Advances

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Despite the global unrelated donor (URD) registry size, the degree to which URD availability is a transplant barrier is not established. We evaluated the availability of 3,843 URDs requested for 455 diverse adult patients (predominantly with acute leukemia). URDs for non-Europeans were more likely to be domestic and had markedly lower Donor Readiness Scores. Of URDs requested for confirmatory HLA-typing (CT) alone (i.e. without simultaneous workup), 1,894/3,529 (54%) were available. Availability of domestic URDs was 45%. Donor Readiness Score was highly predictive of CT availability. Compared with Europeans (n=335), more non-European patients (n=120) had >10 URDs requested and <5 available. Of workup requests (after CT or CT-workup), <70% (604/889, 68%) were available. More non-Europeans had <2 URDs available. URD availability for CT was markedly worse for non-Europeans, with availabilities for African, non-Black Hispanic, and Asian patients of 150/458 (33%), 120/258 (47%) and 119/270 (44%), respectively, with further decrements in URD workup availability. Our data suggest the functional size of the URD pool is much smaller than appreciated, mandating major operational changes for transplant Centers and donor registries. Likelihood of donor availability should have a high priority in donor selection. Considering patient ancestry and URD Donor Readiness Scores, Centers should pursue, and registries permit, simultaneous pursuit of many URDs, and abandon futile searches. Patients should be informed about their likelihood of donor availability and alternative options. Finally, while registries should address high URD attrition and speed procurement, use of all HLA-disparate graft types is needed to facilitate timely transplantation for all.

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Section: Discussionmentioning

confidence: 99%

Racial/ethnic disparities in availability of volunteer unrelated donors for allogeneic transplantation

Fingrut,

Davis,

Archer

et al. 2024

Blood Advances

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“…63,64 Addressing mistrust, misconceptions, and concerns on fair allocation of donors are important factors resulting in opting out of donation and must be addressed in under-represented ethnicities like blacks and Hispanics. 65 There is hence an urgent need to improve overall outcomes in this group through holistic national and institutional initiatives. 66 The results of pre allo-HSCT therapy vary across racial groups which does contribute to the differences in the outcomes seen posttransplant.…”

Section: Survival Outcome Following Allo-hsctmentioning

confidence: 99%

“…For African Americans, although OS increased over the years, 8 impediments to HSCT access continue and due to factors, such as lower educational rates, lack of access to information, and mistrust of medical professionals 63,64 . Addressing mistrust, misconceptions, and concerns on fair allocation of donors are important factors resulting in opting out of donation and must be addressed in under‐represented ethnicities like blacks and Hispanics 65 . There is hence an urgent need to improve overall outcomes in this group through holistic national and institutional initiatives 66 …”

Section: Racial and Ethnic Disparities In Outcome Following Allo‐hsctmentioning

confidence: 99%

Utilization and outcome disparities in allogeneic hematopoietic stem cell transplant in the United States

Ashok Kumar,

Ghimire,

Haroun

et al. 2023

European J of Haematology

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Allogeneic hematopoietic stem cell transplant (allo‐HSCT) is increasingly being used in the United States (US) and across the world as a curative therapeutic option for patients with certain high‐risk hematologic malignancies and non‐malignant diseases. However, racial and ethnic disparities in utilization of the procedure and in outcome following transplant remain major problems. Racial and ethnic minority patients are consistently under‐represented in the proportion of patients who undergo allo‐HSCT in the US. The transplant outcomes in these patients are also inferior. The interrelated driving forces responsible for the differences in the utilization and transplant outcome of the medical intervention are socioeconomic status, complexity of the procedure, geographical barriers, and the results of differences in the genetics and comorbidities across different races. Bridging the disparity gaps is important not only to provide equity and inclusion in the utilization of this potentially life‐saving procedure but also in ensuring that minority groups are well represented for research studies about allo‐HSCT. This is required to determine interventions that may be more efficacious in particular racial and ethnic groups. Various strategies at the Federal, State, and Program levels have been designed to bridge the disparity gaps with varying successes. In this review paper, we will examine the disparities and discuss the strategies currently available to address the utilization and outcome gaps between patients of different races in the US.

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Symptom experiences of unrelated haematopoietic stem cell donors: a descriptive qualitative study

LI,

ZHAO,

CHEN

et al. 2024

European Journal of Oncology Nursing

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Factors Associated with Opting Out of Donation among Registered Young Unrelated Hematopoietic Stem Cell Donors

Cited by 6 publications

References 29 publications

Racial/ethnic disparities in availability of volunteer unrelated donors for allogeneic transplantation

Racial/ethnic disparities in availability of volunteer unrelated donors for allogeneic transplantation

Utilization and outcome disparities in allogeneic hematopoietic stem cell transplant in the United States

Symptom experiences of unrelated haematopoietic stem cell donors: a descriptive qualitative study

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